eBooks

Can you be gluten intolerant without having celiac disease? Can gluten cause symptoms not related to digestion? A growing body of evidence proves that non-celiac gluten sensitivity (NCGS) is not only real, but possibly a larger problem than celiac disease.

An estimated 20 million Americans have thyroid disorders, but more than half don’t know it. Find out why thyroid problems are so often mis-diagnosed, what really causes them, and how to heal them naturally.

Research suggests that healing your gut may be the single most important thing you can do to improve your health. In this eBook, you’ll learn how to optimize your gut health—and by extension, your overall health—with simple diet and lifestyle changes.

What is a low carb diet, really? When can a low carb diet be beneficial? Should everyone follow a low carb diet? Or, can a low carb diet ruin your health? After reading this eBook, you’ll be able to understand the many factors that play into how a person handles a low carbohydrate diet, and whether or not their health will improve on such a plan.

Are common additives to food and supplements like soy lecithin, carrageenan, xanthum gum, and magnesium stearate harmful–or harmless? Read this eBook to find out which ingredients you should be concerned about, and which are safe.

Is sugar “toxic” in any amount—even in natural sweeteners? Are artificial sweeteners safe? What about stevia and xylitol? Cut through the confusion and hype and find out which sweeteners are safe for you and your family.

The Paleo diet has the potential to dramatically improve your health—but the transition doesn’t always go smoothly. In this eBook, you’ll learn the three biggest obstacles to Paleo success, and how to overcome them.

What do memory loss, depression, anxiety, fatigue, nerve pain, and infertility have in common? They can all be caused by B12 deficiency. Find out why B12 deficiency is more common than most doctors think, how to know if you’re deficient, and what to do about it.

Does eating cholesterol and saturated fat really cause heart disease? Are statin drugs as effective as we’re told? Find out what the latest research says in this eBook, and learn how to prevent and treat heart disease naturally.

3 Reasons Gluten Intolerance May Be More Serious Than Celiac Disease

Recent news stories have downplayed the significance of non-celiac gluten sensitivity, even going as far as suggesting that it doesn’t exist. But a growing body of evidence has proven that gluten intolerance is not only real, but is potentially a much larger problem than celiac disease.

iStock.com/jeka1984

About a year ago I wrote an article called “Is Gluten Sensitivity Real” which critiqued a spate of news reports suggesting that nonceliac gluten sensitivity (NCGS) doesn’t exist. These news stories referred to a study indicating that some people who believed they were reacting to gluten were actually reacting to a class of poorly absorbed carbohydrates (which include wheat, among many other foods) called FODMAPs.

You can read the full article above for details, but the takeaway was that the study those stories were based on in no way disproved the existence of NCGS, nor did it overturn the large body of evidence that links it to a variety of health problems ranging from type 1 diabetes, to allergies, to schizophrenia, to autism spectrum disorders. There is little doubt among those who are familiar with the scientific literature that NCGS is a real condition.

Yet despite this, we continue to see headlines in the media like this:

These stories—and many other like them—argue that nonceliac gluten intolerance is rare, and that people who eliminate gluten from their diet are just silly fad followers. In this article, however, I’m going to present three reasons why NCGS is not only a bonafide condition, but may in fact be a much more serious problem than celiac disease.

#1: Celiac disease is far easier to diagnose than NCGS

According to some estimates, for every diagnosed case of celiac disease (CD), there are 6.4 undiagnosed cases that remain undiagnosed—the majority of which are atypical or “silent” forms with no damage to the gut. (1) This silent form of CD is far from harmless; it is associated with a nearly fourfold increase in the risk of death. (2)

I believe that patients with NCGS are even more likely than patients with CD to go undiagnosed. Most gastroenterologists today know how to screen for celiac disease. They will typically test for antibodies to antibodies to alpha gliadin, transglutaminase-2, deamidated gliadin, and endomysium, and if positive do a biopsy to determine if tissue damage is present.

However, we now know that people can (and do) react to several other components of wheat above and beyond alpha gliadin, the component that is implicated in CD. These include other epitopes of gliadin (beta, gamma, omega), glutenin, wheat germ agglutinin (WGA), gluteomorphin, and deamidated gliadin. What’s more, people can react to other types of tissue transglutaminase, including type 3—primarily found in the skin—and type 6—primarily found in the brain. (3, 4, 5, 6, 7, 8)

Why the “gluten intolerance haters” are wrong.

So, imagine a scenario where the patient is reacting to deamidated gliadin, glutenin, gluteomorphin, and either transglutaminase-3 or -6, but not reacting to alpha gliadin or transglutaminase-2—which are the antibodies used to screen for CD by most doctors. They will remain undiagnosed, and may continue to eat gluten for the rest of their lives, putting themselves at serious risk for autoimmune and other diseases.

This is not a hypothetical situation. In fact, I see cases like this all the time in my practice. Here is a screenshot from a recent test I ran on a patient. I use a much more thorough test for wheat and gluten intolerance called Array 3 from Cyrex Laboratories. Unlike other tests, it measures antibodies not only to alpha gliadin and transglutaminase-2, but also many of the other components of the wheat protein I mentioned above, as well as transglutaminase-3 and 6.

This patient is not reacting to alpha gliadin or transglutaminase-2. Had they been tested by their conventional doctor, they would have been told that they do not have celiac disease or gluten intolerance.

However, as you can see, she is reacting quite significantly to several different components of wheat, including:

Native and deamidated gliadin and gluteomorphin, which are compounds produced during the digestion of wheat.

Glutenin, which is the other major fraction of the wheat protein, along with gliadin.

Gliadin-transglutaminase complex, which indicates that the patient is experiencing an autoimmune reaction to wheat.

Transglutaminase-3, which is expressed primarily in the skin, and to a lesser extent in the brain and placenta.

Transglutaminase-6, which is expressed in the brain and nervous system.

When this patient consumes wheat or other gluten-containing foods, she may not experience the classic digestive symptoms associated with CD or NCGS, because she is not producing antibodies to transglutaminase-2 (which is mostly expressed in the gut). Instead, her intolerance of wheat could manifest in skin conditions like eczema or psoriasis, and in neurological or brain-related conditions like depression, peripheral neuropathy, or ADHD. (9, 10)

Worst of all, if this patient had not had this test, and had continued to eat wheat and gluten for the rest of her life, it’s likely that she would have been at much higher risk for the long list of serious conditions that are associated with gluten intolerance, such as multiple sclerosis, ataxia, diabetes, and even Amyotrophic Lateral Sclerosis (Lou Gehrig’s disease). (11, 12, 13, 14)

Unfortunately, this patient is not the exception—she is the rule. I’ve seen so many test results just like this, where the patient would have been misdiagnosed as not having gluten intolerance had they gone to a conventional doctor.

This presents another obvious problem, of course: if very few health care providers are doing the correct testing for gluten intolerance (like the panel from Cyrex above), then how can we possibly know what the true prevalence of NCGS is? We can’t—but given everything I’ve written above, we can certainly suspect that it’s much higher than currently believed.

According to Cyrex Labs, 1 in 4 people that take the Array 3 panel test positive for some form of wheat or gluten intolerance. Granted, this is not a representative sample, since most people that take the Cyrex panel are dealing with chronic illness of some kind.

Even with the limitations of current testing, however, some researchers have speculated that NCGS may affect as many as 1 in 10 people. (15) I suspect this is accurate, if not conservative.

#2: Current cultural attitudes toward NCGS mean more people will remain undiagnosed

There has been a big backlash in both the mainstream media and on social media channels against the idea of gluten intolerance. Despite overwhelming evidence to the contrary, uninformed journalists and armchair Facebook scientists continue to argue that NCGS is some kind of widespread collective delusion—simply a figment of the imagination of anyone who claims to experience it. And for reasons that I do not fully understand, they do so with an almost religious fervor.

The “gluten intolerance haters” seemed to emerge in force after a paper published by Gibson et al. in 2013 made the rounds in the media. This study found that a group of patients with irritable bowel syndrome (IBS) were not sensitive to gluten, but instead were reacting to a group of poorly absorbed carbohydrates called FODMAPs. (16) Aside from the fact that this study did not in any way disprove the existence of NCGS, from a practical perspective the study findings would not have changed the behavior of most people with IBS who identified as being gluten intolerant, since wheat and many other gluten-containing grains are FODMAPs and should thus be avoided by these patients.

More importantly, however, in the last two years since the Gibson paper new studies have been published that directly contradict Gibson’s findings and strongly suggest that patients with IBS do, in fact, react adversely to gluten—and not just FODMAPs.

For example, a new double-blind, randomized trial out of Iran was specifically designed to determine whether a group of IBS patients reacted to gluten specifically, or simply improved for other reasons on a gluten-free diet. (17) Here’s how it worked:

80 patients followed an “almost-gluten-free” diet (dietary compliance was considered optimal if consumption of gluten was below 100 mg/day, the equivalent of roughly 1/8 tsp of wheat four).

After six weeks, the 72 patients that complied with the diet and experienced significant improvement were then randomized into two groups: Group A, and Group B.

Group A (35 patients) was given a 100 g packet containing a gluten meal (free of FODMAPs). Group B (37 patients) was given a placebo packet (100 g) containing rice flour, corn starch, and glucose.

Patients in both groups consumed the powders for six weeks, while both groups continued on gluten-free diets.

After six weeks of the diet symptoms were controlled in only 26% of the gluten group, compared with 84% of the placebo group. In the gluten-containing group, all symptoms—especially bloating and abdominal pain—increased significantly one week after starting the gluten.

The authors point out that it is important to properly identify gluten intolerance and distinguish it from FODMAP intolerance because some recent research suggests that long-term low FODMAP diets may have adverse effects on the gut microbiome. One study found that a low FODMAP diet compared with a habitual diet reduced the proportion and concentration of Bifidobacteria, one of the most beneficial species of bacteria in the colon. (18) (Authors note: I will be exploring this issue in more detail in a future article.)

But I would add another equally serious consequence of misdiagnosing gluten intolerance as FODMAP intolerance, which is the increase in risk for numerous and sometimes serious diseases that occurs when someone with NCGS continues to consume gluten.

This last point is a natural consequence of the first two. If detecting NCGS in conventional medical settings is unlikely, and there is a strong cultural backlash against it, where does that leave the millions of people that are likely suffering from NCGS without even knowing it?

Even if they do suspect that they are gluten intolerant, they might be dissuaded from pursuing a strict gluten-free diet by their friends, social media contacts, or even their doctor, all of whom are likely uninformed on this subject and do not understand the deficiencies in conventional testing or the complexity of the topic.

Based on the research I’ve reviewed in this article, and several others I linked to here, we should be more aggressive—not less—in diagnosing and treating gluten intolerance.

We need greater access to test panels like Cyrex Labs Array 3, which is the only commercial test outside of a research setting that screens for antibodies to many of the proteomes in wheat, instead of just testing for alpha gliadin. We need better training for doctors on how to recognize the myriad of symptoms and conditions associated with gluten intolerance, so they don’t make the common mistake of assuming that the patient isn’t gluten intolerant if they don’t have digestive problems. And we need some prominent journalists to educate themselves, step forward, and take responsibility for treating this as the serious, potentially life-threatening problem that it is.

Even without access to tests like Array 3, an elimination/provocation trial where gluten is removed completely from the diet for 60 days and then reintroduced is still considered to be an accurate method of assessing gluten intolerance. Doctors should be much more proactive about recommending this to patients, and despite the claims of some mainstream nutritionists and dietitians to the contrary, there is no risk to removing gluten from the diet. (19) If anything, people on a gluten-free diet are more likely to increase their intake of essential nutrients, especially if they replace breads and other flour products with whole foods (rather than with gluten-free flour alternatives).

Finally, it’s worth pointing out that many people that are intolerant of gluten are also intolerant of other food proteins found in foods like dairy, eggs, and unfortunately, coffee. Studies have shown that about 50 percent of patients with CD show intolerance to casein, a protein in milk. (20)

This may explain why up to 30 percent of CD patients continue to have symptoms or clinical signs after adopting a gluten-free diet. (21) For this reason, I recommend a completely grain- and dairy-free diet during the gluten challenge period. (Check out my 14Four program for a great way to get started with this.)

Okay, now I’d like to hear from you. Are you gluten intolerant? If so, how did you find out? Have you felt judged or criticized by your friends or by your doctor for following a gluten-free diet? Do you have someone in your life that you suspect is gluten intolerance, but is in denial because they don’t believe in it? Let me know in the comments section.

Like what you’ve read? Sign up for FREE updates delivered to your inbox.

Email*

I want to improve my...

I hate spam too. Your email is safe with me. By signing up, you agree to our privacy policy.

Categories

Affiliate Disclosure

This website contains affiliate links, which means Chris may receive a percentage of any product or service you purchase using the links in the articles or advertisements. You will pay the same price for all products and services, and your purchase helps support Chris‘s ongoing research and work. Thanks for your support!

I found out I have non celiac gluten sensitivity, and some of my family still doubt this! I didn’t have your recommended screening, just the typical celiac blood test. But I was sick off and on for months! Lost 25 pounds, had digestive issues! Finally I found a nutritionist who got me off all gluten. She said I had many symptoms of celiac even without positive blood results. It took me a full year for my health to fully recover, and during that time I could not do dairy as well. I can do very small amounts of dairy now, but I also have gastritis and during flare up, no dairy! Other people including professionals are somewhat ignorant! I have a chiropractor who does natural supplements. I just started on wheat germ oil, which he assured me had no wheat in it, but I got stomach pains and diarrhea after taking it! Most likely gluten traces are in it! So glad I figured it out, and only had taken couple of doses ! Anyway, I am 7 years with this sensitivity, and I cannot have any gluten at all! So I don’t take chances! I guess expecting others to understand is unthinkable! But my husband is a great support. A friend is bringing over gf apple pie as a treat, but I had to ask her how she made it, and what she put in it. Rather safe than sorry! And, also did it come in contact with any gluten in her kitchen?

I was asbestosis eat more wheat , eat more wheat. about 3 years ago I began to get sick for different illnesses. My migraines were stronger and more frequent like twice weekly. Heart burn, tiredness and bluttednedd when I ate bread. I did not put it all together. After a long pregnancy with digestive issues and daily migraine I delivered my son and was admitted back to the hospital a day after discharge with fluid retention, head aches and brady cardia. All the issues of pregnancy complications such as preeclampsia was rullef out. The doctors basically had no answers and just treated the symptoms. Weeks later i started suffering from weakness in my arms with pain. I was afraid to hold my newborn baby because I had no strength in my arms. They diagnosed me with carpal tunnel syndrome. I stayed home for an additional month resting. I returned to work and my symptoms would get worst. I started developing neuropathy both in my hand a and legs. They stated the hands were due to carpal tunnel syndrome, surgery was advised and done. One week after the surgery I went blind for a few minutes. I was admitted and all sort of autoimmune test were done again. I had already been seen by a neurologist, rheumatologist, gastroenterologist and orthopedic doctor. All the autoimmune disease were ruled out and test were all negative not once but twice, yet I felt like I was going to die. Doctors and even my friends who are doctors started telling me it’s in my head and I may be stressed. I keep telling them i’m getting stressed because I’m sick and no answers. By this time all my joints were cracking and hurting, the wrist of the surgery was constantly sore and wasnt getting better. I was dizzy all the time with blurred vision. Things were falling apart real fast. My shoulders and hip would hurt from laying down, I was constantly in pain. I was determine to find out what’s the problem. I had to fight the drpression and start looking for answers because clearly my doctors had none.

I could go on and on about my symptoms but it would take all day. Finally I came across a lecture by Dr Fisiano from Boston university on cilliac disease and NCGS, the case study was exactly me. As of that day I went gluten free and I’ve been 90% better. All most all those symptoms were gone. 90% because it’s been 5 months and living gluten free can be challenging. I’m also very sensitive; therefore, even traces of gluten affects me.

I have found that my psoriasis flares up only when I eat foods containing modern American dwarf wheat (a.k.a. “Frankenwheat”) which is probably 99% of the wheat consumed in America today. I can eat all of the pasta I want if it’s made from either Einhorn or Durham wheat, or things like Wasa rye crackers, which also contain gluten, without any problem at all. I can’t help wondering if most of the problems that people with some sort of “glutin sensitivity” have isn’t really specific to Frankenwheat.

I find that if I eat wheat products imported from Italy or Germany, in moderation of course, I do not get the gluten-related flare-ups. My thoughts mirror yours – it’s the genetically modified dwarf wheat AND the glyphosate in USA crops. “American genetically modified dwarf wheat” is not grown in Europe. AND, reminder that glyphosate (Round-Up) is banned Europe. I am convince glyphosate has a lot to do issues associated with USA grown crops.

I am still trying to determine if I have Celiac or NCGS, I was given a blood test about a year ago for Celiac all of the things they tested for came back normal except for the Non Deamidated Gliadin IGA, I was told the normal range would be under >13 and that my test came back at 1250. The doctor I was seeing at that time had me do a endoscopy but it came back as inconclusive, he wanted me to also do a test where you swallow a small camera. It was at this point that I was told that even though I had checked in advance that his office was not covered by my insurance as in network and that I was being charged a huge amount of money for services already rendered so I could not afford to see him any more. I then went to another Gastro doctor that was in network and she did another blood test and I was told that it came back normal. At this point I didn’t know who to believe so I decided to do a DNA test for food sensitivities and that came back stating I had a gluten intolerance. My symptoms are Weight Gain, Constipation, Joint Pain, Brain Fog, severe Acid Reflux and extreme Fatigue. I also question whether I should just eliminate wheat or is there a better diet for me to be on, my sister has similar issues and she is on the Fodmap diet and has improved significantly.

I’ve had psoriasis for a decade.then about 5 years ago I started having serious stomach aches. I would awaken at night with a horrible pain that the gastrointestinal Dr had no idea how to fix. I already knew I was reacting to dairy, so I cut that out of my diet. This helped a little but not fully. I then decided to try going gluten free as well. I am now a year into being gluten and dairy free (and legumes!) and my stomach doesn’t hurt anymore, my bloating has gone down tremendously, and even my psoriasis is very minimal!

I am a newly diagnosed gluten-intolerant with a value of 19.3, and who also tested negative for Celiac and seronegative for RA. I am being treated for migraines, IBS, anemia, fibro,inflammatory arthritis,neuropathy, and depression. Muscle weakness has forced me to quit my job and I am currently being tested for Myasthenia Gravis. I am about to embark on this new gluten-free lifestyle change,but is this damage reversible? Will I be able to return to work or are disability benefits approved for such? I am 50 years old and dealt with these issues my whole life. It has taken me this long going through uneducated providers before finding someone who presented this to me as a possible solution.

Tammy I have to say your symptoms are very similar to mine. I went gluten free and I’m 90% better. No more migraine, neurophy gone, my weakness has subsided my blurred vision has improved to about 90%, dizziness gone, heart burn gone, bluttedness gone, my joint pain pretty much gone. I found out I am also sensitive to coffee; however, I feel energized and don’t need it. I feel alive again, thank God for letting me figure this out.

Nancy, Our symptoms certainly do sound like they followed a similar path. How much time would you estimate passed before you would say there was significant improvement? My specialists are split down the middle concerning the role gluten is playing in my ill health and my internist is actually suggesting I stop my GF diet! I have been gluten-free only 4 weeks and your comments give me hope. THANK YOU!

I’m gluten intolerant as well as dairy intolerant. I found several studies that say 90% of people that are gluten intolerant or have Celiac Disease, are also intolerant to dairy. So, if you’ve cut out gluten and are still having issues, try cutting out dairy as well.

Wheat/gluten gives me migraine headaches. I tested negative for IgA antibodies. I paid for testing which said I had IgG antibodies for wheat/gluten (and soya) According to my doctors the IgG antibodies and the migraines are NOT connected. One doctor more or less said I was mad/ Got no support at all – made a lot of mistakes in the early days (malteesers, malt vinegar etc….and I paid for it with a crushing migraine….but in a way this just confirmed that I was right. I do have an uncle who is celiac……I suspect there is a genetic component to this. Posting this because there is bound to be someone else out there with the same issue. Hope this helps somebody. I went gluten free and I am doing great

Thank you, this gives support to my experience of migraines from wheat/gluten (*not* FOODMAPS!) and doctor’s disregard and refusal to even test for antibodies. The only thing worse than the migraines and peripheral neuropathy triggered by gluten, is the insufferable ignorance of the general public and even doctors. Sometimes it’s easier to just say “yes” when people ask if you’re ceoliac, so they’ll take your extreme reaction to gluten seriously.

I fit this article. Did not have gastro symptoms. Diagnosed with Hashimoto thyroiditis. Dr finally convinced me to go wheat/gluten free. TSH and antibodies much improved even though I still got traces of gluten. Fell off my good efforts over the holidays. When next tests were run, my test scores were bad again. Heartbreaking to have to live the wheat free lifestyle for me. Still have to cook for others. They will only go so far with this way of eating. I’ve also been experimenting with dairy and believe it is causing skin issues, bloating, and generally feeling bad. About to try and go dairy free for 1 week to see if skin issues start to heal.

Thanks for this article. I think it is easy to downplay something one has not experienced first-hand.

I think its important to say that I am sub-saharan African, and it would seem unlikely by medical science that I would react to gluten.

But I have had bouts of Chronic re-curring illnesses that defy proper medical explanations- from recurring fevers (monthly with no known cause, chronic severe leucopenia, polyathralgia, burning hands and feet, dry mouth and eyes (intermittent for months) , chronic dermatitis and very severe iron deficiency anemia to mention those I can remember. But somehow despite many tests , there has never been any conclusive diagnosis.

I write this because I noticed a trend after consuming wheat products (and milk) which usually results in hospitalizations and critically high inflammation markers CRP and ESR I have since gone off gluten to the best of my ability , not only did most of the symptoms including eczema of over 15 years clear noticeably but I dont have as many fevers nor am I constantly exhausted. Im not sure what form the mechanism of action takes in my condition, but it is obvious to me that wheat and its products have some definite effect on the illnesses I experience, so much so that I dread to do a gluten challenge

Hi, So I just got my Celiac blood test back and of course they are negative, but I am 100% sure I’m gluten intolerant among other things! I wish it was Celiacs so I could just ell everyone that and they would leave me alone. But I’ve found I still have reactions to “gluten free” products. I assume from this article that means I need to cut out all grains and milk products?!? What a dud! I’m glad I found your article and wish more doctors were as informed. I think my son has the same problem as me. It of course is more difficult to convert my 8 year old to gluten free diet especially when his pediatrician says his Celiac test was negative. I assume you don’t know, but do you think non celiac gluten intolerance is hereditary? My other son is fine with gluten.

Yes, indeed, it is hereditary. As I have commented in earlier posts, the thing to do is NOT to simply replace gluten things with gluten free things, but to actually go on an anti-inflammatory diet (also called the elimination diet) for 1-2 months (depending on how bad your leaky gut is) and then slowly reintroduce things to see if you have a reaction to other things (such as rice, potatoes or egg.) 50% of gluten intolerant people are also casein (milk protein) intolerant. The better thing to do is to get the Cyrex test done for the major food sensitivities before you do this along with their leaky gut test (arrays 3 & 4?) Insurance won’t cover it but it is gold because you will know for sure. Get your sons tested, too, so it is in black -and-white. No denial. It may seem so hard to change the diet at his age BUT SO IMPORTANT. I had to do this for my children at ages 9 & 11. I am trying to figure out how to publish a book I have written from the mother/cook perspective as I know that the change is daunting. Our family made the change six years ago. The kids had a more gentle elimination diet for about 6 weeks which only cut out all wheat products, soy, milk anything containing any derivative of any of these. The reason is simply that as they were so much younger their guts were less leaky (sorry for graphic-sounding terms but only way to say it.) My book is completely practical and stresses the importance of looking at food completely differently as we all go forward in this difficult world, leading the numbers which will eventually be discovered to be celiac and NCGS.

I could no longer feel from mid-calf down and experienced three life threatening infections in a toe that had other problems. For a totally different reason I started taking extra Biotin and began to feel something different in my feet. So, I started researching ‘Dr. Google’ as my Doctor called it. I came across Gluten Intolerance, which fit me from since I was little. I started a gluten free diet and the feeling in my feet continued to get better to the point that I can now walk around our old neighborhood without needing hiking sticks to feel like was not about to stumble. I first went gluten free at 66 years old.

Richard- I think I am you. How long did it take for you to notice a difference in sensations in your feet? Do you think it was the gluten free diet, the biotin, or the combination? Thanks in advance for your response.

My diet all my life from kid-late 20’s was pizza, pasta, and bread. I was normal weight and very energetic always, though I started having issues with psoriasis, it just sprang up out of nowhere in my early 20’s. Then in my late 20’s It just hit me like a brick wall for months i just felt awful and sick constantly, I gained prob 25 lbs, had no energy, weak, really moody all of a sudden and somewhat depressed, horrible paralyzing migraines would come 2 times a month and my period was horrific! It seemed to be getting worse and worse as time went by. My nails were always nice looking now they were brittle and clear. Nail health is a sign of being mal-nourished I remembered. I could tell my body wasn’t getting the nutrients I needed so I did my own research and I decided to change my diet, I stopped drinking beer, eating pizza, bread etc. and within a week I felt so much better.

But I was still having issues.. maybe it was all the “gluten free crap” i was eating as well 😉 I was desperate..I don’t like docs to begin with but i went to a gastrologist and he wanted me to take several test that were very expensive and he wanted me to eat gluten for a whole week to take a test that may or may not tell me. But I thought what would if matter what this dumb test said if there isn’t a cure..?? then prescribed me meds to help ease my stomach pain. Right then I knew I was at a pivotal point in my life. Its so sad how doctors are truly making us sicker, taking meds would destroy my stomach lining even more and there was no way I was going to put my body through eating gluten again when I was somewhat feeling better. I kept doing more and more research, I learned that gluten destroys your cilia(how your body takes in nutrients from your food) I def had killed it all that is why I had been feeling so awful.

So I ignored the doctor i felt in my gut (no pun intended) that his advice was not right and I went to a holistic doctor. He put me on a strict paleo diet. No grains, no dairy, no sugar except some honey and real maple syrup. -This is the key and closest to a cure. A balanced PALEO diet/clean eating. I’ve been on paleo for 2 years now and i feel like my body is 90% recovered now, thats how bad gluten and other shitty by products found in food are.

What people don’t understand is it takes weeks, months even years for your system to truly recover if it can. If i ate too much rice sometimes it would inflame my intestines and i would be sick for a week or two. That is why i disagree with all these studies saying its all in peoples heads even after they stopped eating gluten they still have stomach issues. well duh..Its a complex system, your body has been through hell and in a prolonged period of (dis-ease).

When I was 28 and remember having horrible joint pains as well and now i have no pain. My psoriasis is completely gone as well. (I look at these commercials to help tame psoriasis and its discusting all the side effects, this shits only making you sicker!!! dont take the pharma pills!!! but thats just my opinion. I am very thankful of reading this article knowing i am working on preventing myself from having theses other serious diseases you talked about in the future. Scary to imagine. My migraines are minimal and not near as debilitating where I would use to think I needed to go to the hospital. They occur every few months but i think it is more associated with stress/hormones. My period is 100 times better as well.

All I can say is do research research research as much as you can from all different points of views. Doctors are heros for the most part but I can’t put my trust in them fully because no one is infallible and we as humans don’t know everything.

@Victoria – Wow – really similar story. Loved bread, pizza, pasta. Used to crave it – and sugar. Really sporty and energetic. Used to get really sluggish sometimes (food coma) after eating a massive carby meal but generally okay (but always TERRIBLE period pain). Then it hit me in my 20’s – psoriasis, adult acne, sluggish and I put on 10 kgs. Cut out gluten, got so much better. Taking gluten out mainly helped with my concentration, energy levels and psoriasis. Then I cut out dairy and eggs and that was the icing on the cake. Skin problems (acne) and period pain completely gone (!!!). I used to take the most hectic anti inflammatories and went to hospital for pain and ovarian cysts etc. I kept asking doctors what I could do and not one of them suggested omitting anything from my diet for any of my symptoms. Youre right, listen to your intuition and research research research. Good luck to everyone out there 🙂

I have had a rash on my face and upper neck for the last 3 years – and nothing I do seems to help get it to go away. The face thing is new – but I’ve had excema on my hands and to some extent (my arms) for as long as I can remember. I don’t think I’ve had a problem with Gluten in the past – but maybe age changes things like that. But a friend at Church said that she also had excema and as soon as she went Gluten free – the excema went away. I have bad allergies as well. Do you think Gluten could really be the culprit? I eat alot of biscuits, bread and pizza – and sometimes have a few beers.

How would I go about getting the special test you discuss in this article?

I am really ready for some relief. Any ideas or help would be greatly appreciated. Thanks! Melissa…

Don’t waste your time or money going through a test, it doesn’t matter the results. You get the real results by what you put in your body. I would recommend you go on a strict paleo diet. I’ve been eating paleo for 2 years now and feel like a whole new person. I used to have psoriasis, gluten intolerance and after going paleo it went away. Same with allergies i used to have horrible allergies and sinus infections now i never get sick.

Try going off the breads biscuits n pizzas ( and cakes if you love cakes as I do). If gluten or wheat products are the culprits you may feel so much better as I did, but it may not eliminate for good the all the health challenges. You may need to occasionally try this drop that. I try to do natural products as close to the Farm harvested product as possible and I avoid most things that have gone through processing. Salads and veggies help me a lot. Good luck

I literally laughed out loud when you spoke about ‘gluten free haters’ voicing their opinions on the subject with a religious fervor, as it is SO true!! Which I will never understand either.

My earliest childhood memory is of sitting on the toilet screaming from the excruciating stomach pain. My Mom tried everything, but because Celiac and gluten intolerance was unheard of back then, (I am 53) my condition continued to worsen and led to auto-immune diseases, migraines, constipation/diarrhea…the list could go on and on.

I have been gluten free for many years now, but unfortunately my stomach pain, bloating, headaches, and other ailments continue to plague me. As a matter of fact, I am home from work sick as I write this.

As much as I hate to, I think coffee will have to be eliminated from my diet as well. I gave up dairy long ago, as the reaction to that is just as bad as my reaction to gluten. But coffee…oh man I love my coffee in the morning. It’s time though…and I am committed to give it a shot. Anything is better than living with the pain, depression, (which is a new development) and fatigue that is a part of my daily life.

I have people counting on me as the main bread-winner and caregiver, so I need to do whatever it takes to get control of my symptoms.

Thank You for your recommendation of giving up coffee as a way to manage this complex disease that effects the entire body, not just the gut!!!

Yes …..I have found that coffee is a problem too (I am fine with tea) I also seem to react to coconut. I lived on meat and veg for a while…..did fine on that……introduced other things slowly….if you do that any other problematic foods will show up. google elimination diets…..I still do best if I eat mainly meat and veg, I am also pre diabetic …this diet works well for that too

Hi Chris, great article, i was diagnosed end of october with Allergan Gluten: 7.33 igg and was informed it should be below 2.0 and that it is a severe allergy. It seems very general, compared to your list and wondered what category that may encompass? And is there a scale of how high an allergy for gluten can reach? Where am i at on the max? i actually went through a horrible year, where my health seemed to deteriorate quickly and get worse to the point where my family and friends thought i was sick with something very serious. They thought i must of had some form of cancer. Migraines eventually became a daily occurence & what i initially thought was food poisoning basically became a daily occurence. I have always been athletic and in shape and my body changed suddenly around the center of my body/stomach / major bloating 24/7 and people thought i was pregnant, but not just from how large my stomach became, but i would be running to the bathroom in the middle of lunch or dinner vomiting or other stomach upset. also many times i would be up all night with a severe sharp pain in the center of my stomach , i would sometimes pass out from the pain. I was extremely fatigued all the time and my job overall became in jeopardy despite me working soo many hours. As my health became so bad, i finally made that appointment to see the doctor in october. Had every single test you can think of. When the results came back, i was shocked to learn about gluten and that you can be allergic to it. I was informed, do not eat any gluten at all. Since end of october , i came off cold turkey and my body quickly changed, stomach back to normal, i honestly feel amazing, no more migraines, stomach pains, stomach upset, i have my energy back. But discovered i react to cross contamination, the worse seems to be consuming anything that touched what a bagel touched. Or a gluten free pizza that was baked in same oven as a pizza that has gluten. (Both, i am instantly sick: vomiting or other stomach upset & stomach bloating. Note: i have found some things to be much more severe than others, the above most obvious, why i am curious about your breakdown) . (Also, i had/have different reactions, so wondered what different types of gluten caused what symptom? ) but i have to be very careful eating out at restaurants or at parties, and inquire about preparation & cross contamination. I never react when i eat food at home from food shopping: gluten free guaranteed products. It has to have that label. As for friends and family and even my boss: very supportive, they know the hell i went through, they really thought i had something serious: ie high stage cancer, but knowing how sick i was, they are very supportive. Most restaurants are as well, and many are gluten conscious..including cross contamination, but some are not and assume you are on one of those gluten fads despite having to explain 3 times how serious it is. And that i wish i could eat it. (I love food and used to eat everything & anything..or used to). I even had people say to me there is no such thing as a gluten allergy, only a sensativity, unless you have celiac, then its an allergy. Why do people have this info or think this? The docs did do an endoscopy & colonoscopy end of December and i was informed i do not have celiac. I was off of gluten for 2 months prior to test, but was informed that should not affect results. Is this true? Anyway, chris, thank you for raising awareness, it is much more prevalent than ppl realize, my doctor said that for every person that comes in with just some of the symptons i had, she includes gluten testing every time because a huge number..40% come back positive with the Allergan Gluten.

Why is it so many “gluten intolerant” people (my wife for example) can travel overseas (France, Italy, Australia etc.) and eat wheat products with abandon and have ZERO issues??? All wheat has gluten no matter where it’s grown so this has to mean her issues are NOT gluten related.

What is difference with our (USA) wheat products and wheat products from other countries? GMO? Roundup? other chemicals? Something else besides just gluten has to be the cause…

Hi! Thank you so much for putting together all this information! It’s definitely helpful; I didn’t know that there were so many different compounds people could react to. I’ve been gluten free for about 2 and a half years; the main reason I began following a gluten free diet was due to acne (I’d had bad cystic acne for years). I was also having some bloating/digestive issues. I also had bad back joint pain for a few years as well; they only stopped after I stopped eating gluten (I noticed a difference a few days into my new diet). It’s interesting though because no one else in my family has had bad acne or any issues with gluten, at least that they’re aware of; and there’s no known history of celiac disease in my family. I don’t have celiac, but am more of a self diagnosed gluten intolerant. Do you know where I could take the test you talk about? Or if the skin patch/needle allergy test is effective? I’m also wondering if you know anything more about the links between join pain and acne and gluten. Thank you so much!

I was gluten free (and dairy/egg free, because I’m vegan anyway) for 3 months, from Late September to Christmas…

When I ate gluten during the holiday season (2 1/2 weeks), I didn’t really notice a change. However, recently (about 1 1/2 weeks after being gluten free again?) I had a few days with quite bad indigestion… it has since gone away.

Am I gluten intolerant or not? Are the symptoms supposed to show up right away? Because from when I started eating gluten at the beginning of the 2 1/2 weeks, to when I had my stomach troubles (after an additional 1 1/2 weeks gluten free) was about a month. I feel like if the symptoms were connected they would present much faster.

Gluten gives me migraines. If I eat gluten… the migraines show up 3 or 4 days later…….this does make very hard to work out what is going on (and gluten turns up everywhere….beware “malt” etc.) From what I can gather…it is possible to react to almost anything……but a google search will reveal the most likely suspects

I have two comments. One, thank you for having citations. It would be great if there was a list of them on the page so I didn’t have to click each one. Two, to make a comment, I had to scroll past the comments allllllll the way to the bottom. Since your blog is popular 😉 it took a while. Mobile browsers don’t have a way to do this like pressing the [end] button on a computer.

I had migraines – real bad. Doctors treated me for depression – prozac …which didn’t touch the migraines. I am also prediabetic..was told I’d do better with regular food intake …told to have breakfast. I chose to have something easy to prepare for breakfast – I chose bread rolls….dear me was I ill. That was the first clue that I was NCGI. Doctors tested for celiac – came back negative. I paid for private testing – I have IgG antibodies for Wheat/ gluten (and Soya) Interestingly I have a close relative who does have celiac – wonder if it is genetic. I went gluten free anyway – doctors do not believe me but I am doing hugely better, weaned myself off the prozac (doctor refused to help with that too) I made loads of mistakes – gluten turns up all over the place and I didnt get any help because the doctors do not believe me…but I hardly ever get headaches now let alone migraines….oh yes and prediabetes is still being controlled with a low carb diet.

I’ve been experiencing gluten intolerant and Celiac Disease symptoms since September of 2016. From itchy rash, mentally and now my gastro. I’ve recently gotten a leaky guy and it’s been so hard. Today I go to my doctor and he says all my blood tests are good and I am healthy. How? If I feel so horrible. I’ve lost a lot of weight trying to figure this leaky gut on my own. My doctor didn’t even flap an eyelid when I told him of my weight loss and leaky gut. I am frustrated. I know it’s not all in my head. I was a pizza and bread lover. These is the last thing I would ever thaught would happen. Before September I also felt “gluten free” was a fade. Boy was I wrong:/ At least he agreed to referral me to a gastroenterologist. Is there any doctor in the USA that can test me for gluten sensitivity? Unfortunately, I live in Las Vegas and I haven’t seen a doctor that truly cares.

I have a question. I get a numb face after eating gluten and I start getting dizzy. I didn’t even realize this was because of the gluten until recently. I was already avoiding gluten because it majorly upsets my stomach and then found that the little I was still getting was the cause of the facial numbness within a few mins after I ate certain things. I saw on other sites that the more you don’t have gluten the WORSE it gets when you get trace gluten. How can I avoid gluten but take just enough to not become completely gluten intolerant? Right now I can have very little because I’ve avoided it for months. I think it’s the soy on rice that is making my face numb when I eat it and for about 20-30 mins after.

I have been strict GD for 8 yrs and I react really badly to soy sauce! My face breaks out in what is like hives.ive not seen anyone else who reacts to soy sauce like I do. I use coconut amino at home for stir fry.It’s those fajitas I can’t seen to say no to and they use soy sauce, I believe 🙁

Unfortunately, normal soy sauce is chock full of wheat. So it’s no surprise you reacted. Some of us cross react with soy too, or so I’ve heard. And milk. Milk ingredients seem harder to avoid sometimes than gluten. I cross react with milk, what a pain. Celiac, and GF for 8 years, here too. And don’t forget to check your cosmetics. Glutens hiding in there too, bah! Dermatitis Herpetiformis, (skin celiac), is no fun either. Good luck with the avoiding!

Yes. I couldn’t even believe it myself. I was tested for Celiac (blood and biopsy) and it came back negative. I was a former bread addict. I finally tried removing gluten over a year ago after being diagnosed with lymphocytic colitis. This was life changing along with removing soy and reducing coffee which has a gluten cross reactivity. Gluten sensitivity is REAL. My gastro said he didn’t really believe it until he saw my case.

Well…… if you gave up gluten before your test (a no-no), then of course it would come back negative. You should have your test while you are actively a gluten eater. NOT after you have stopped ! Jus sayin.

Good Afternoon, I am definitely gluten intolerant. I had noticed around 10 years ago certain foods would set my stomach crazy so I had avoided them but didn’t really pay to much attention to it. It kept getting worse and worse and I could not figure out why I was having such gastric upsets! I thought wow is this all in my head many times but my tummy was telling me nope it isn’t. 5 years ago, I had read about gluten intolerance and the symptoms and it was like the light bulb went off, I knew that is what it was. I went to my doctor and she decided that I should cut out all gluten from my diet for a month, then she had me go back on it for a month. I thought my stomach was going to explode after eating the gluten for a month. We did not go for the testing since it is so expensive. I have a few autoimmune diseases and she thought perhaps that might have something to do with it as well. Currently, I have Graves Disease, RA, Ulcerative Colitis. Not sure if that has anything to do with the gluten intolerance but possibly all related. Currently, I do not eat anything with gluten and I am super careful about reading every label, who knew that malt something was gluten! There are many hidden ingredients and if I am unsure I can google the product on my phone. I work out at the gym 5 days a week, cardio and strength training, take a great probiotic and all of these things seem to keep my tummy in check. I have discovered some places are really great about taking care not to have cross contamination and if I ask them they will change their gloves when handling my food. There are some places where you can get gluten free foods. There are so many more products in the market now that are also gluten free. I have experimented with making my own GF bread and I can eat hot bread anytime I want. It has been an adjustment and you have to ask a lot of questions when you are out. Yes, folks get annoyed but I can instantly tell if there was cross contamination of my food because my stomach will immediately let me know!

I am sooo glad I did a search and found your article! I have gone repeatedly to the Dr.’s for everything from Asthma, Heartburn, Allergies, Fatigue, Depression and the list goes on and on! When I cut Gluten out all of these symptoms go away! The Dr. told me there is no connection.. which I know for a fact is not true and it seems like the more Gluten I consume the worse the symptoms get! For example Dog Allergies.. I have a Great Dane and a St. Bernard both are indoor dogs and as long as I am Gluten free I am not allergic to them but the minute I start eating Gluten I start sneezing, my nose starts to itch, Hives and my eyes practically swell shut and don’t let me get started on the asthma!!!! It is nice to know that I am not alone:) I thought I was going crazy since the Dr. was adamant that there is no connection.

It seems to me Natalie that a lot of General Practitioners don’t really think of gluten intolerance or celiac when they are treating a patient. Their method is mostly to treat symptoms but not find the source of the problem/s. I have read of so many self diagnosed people on this forum like you. I am also self diagnosed and through God’s guidance stumbled across gluten intolerance after trying to find out why my ankle, with a cyst under my tybial cartilage, wasn’t healing. With blood results of low iron and low vitamin D, I suspected I had malabsorption and thought I would give gluten free a trial for 2 months. So many symptoms such as rotten breath, sinus, bloating, mood swings, ulcers in the throat, constipation, terrible dandruff, constant ravenous hunger and bleeding gums started to get better or disappear all together. And after 3 months in a moon boot my ankle started to heal with no need for the operation the specialist suggested I may need. I asked my GP for a bone density test because if I had malabsorption then I thought my bones could be suffering. He humoured me and to his surprise the results came back as borderline osteopenia. My Mother has suffered from depression all her life and only came out of an awful 4 year stint because she thought she would try going gluten free after seeing my improvements. She also does not suffer from constipation anymore either and has lost unhealthy weight. My long point is I do think the family Dr has their good points but they don’t know everything. A lot of mainstream Drs I have come across are arrogant and don’t have the desire to really listen to the patient or find the cause of the problem. I am so glad you have found relief from your allergy and can enjoy life and your dogs more.

I’m pleased for you and understand that conventional doctors aren’t open minded enough. I have just started a gluten free vegetarian very low dairy diet and can feel improvements already, my husband is doing the same but with a little more gluten but my Chen love bread!! My middle child a boy of 9 yrs has mid spectrum autism and has a limited diet due to sensory issues but we believe we can find a yummy gf bread for him. Both he and his older sister have been tested for cealiac more than once at my persistence and due to many digestion issues. My youngest our foster boy at 2 I believe is dairy sensitive and has trauma issues. Therefore after reading articles and joining this conversation We have decided to run a gluten free house plus continue our healthy diets. Hoping to see differences in health, mood and behaviour. Di

Hello, I believe I have either gluten or wheat intolerance. It took many years before I realized this and no doctor diagnosed me. I simply cut gluten out of my diet for a month and severe symptoms began to disappear, stomach problems, swelling feet, etc. Reading this makes me wonder if I have a gluten or wheat allergy. I have a PPO and am curious what type of doctor I should see to have an allergy panel like this run.

Might we stop comparing our health maladies, trying to claim who’s might be the worst? Can we all just join the conversation to share experiences that may help resolve the gluten problem with across the board? I don’t have the problems many of you have. I do have Progressive Small Fiber Neuropathy that is scaring the life out of me. I won’t claim that this is a problem worse than some of the awful symptoms many of you have (it potentially may be) but am in this conversation to understand what may cause this and what I may do.

*This is a bit lengthy, but I want to share my story in case it helps someone experiencing what I experienced feel like they are not alone. I know what it is like to try to find an answer. I spent many a desperate night searching people’s stories that might mirror my own …*

I had been suffering from a progressive Small Fiber Peripheral Neuropathy for approx 7 months. It had started rather subtly on my left leg and then progressed rather insidiously over several months, to the point where I was experiencing an unrelenting, creeping numbness on my left leg, bugs on the bottom of my feet, paraethesias in the form of vibration/humming sensations running incessantly down my left leg, and numbness on the left side of my face on my left arm. I also had a horrible nausea and a severe case of exquisitely painful chronic tendonitis in both of my shoulders. I had been to my doc too many times to admit during those months, who then sent me to a neurologist when his preliminary tests were normal … and then to a rheumatologist … only to return to the neuro 2 times when the symptoms were getting out of control and becoming more concerning. My doc, the neurologist and the rheumatologist all looked at me as if this were a perfectly normal occurrence in a 46 year old female who up until this experience was healthier than most people out there (no health history, no smoking, no drinking, healthy weight, loved exercised, and ate in moderation). In fact, rather disappointingly, my doc recommended in a very kindly fashion that I practice “mindfulness” on more than one occasion. I felt helpless because I knew there was something wrong, and I knew it was getting worse, and I couldn’t seem to convince any health care provider that my symptoms were not a somatic manifestation of emotional distress- which is what I think they believed.

Then one day, 7 months into this ordeal, my husband happened to be doing research to help me figure this out. He stumbled upon celiac and gluten sensitivity. I thought it quite a stretch since I didn’t have the classic GI symptoms, but remembered that my Aunt from Ireland was diagnosed with celiac 15 or so years ago and my mom died of esophageal cancer. With a little preliminary research I learned that celiac is an inherited autoimmune illness and that adult onset of this illness can manifest in non-GI symptoms such as SFPN. In fact, there is more and more evidence that suggests that more people have celiac but don’t know it because they present with no GI symptoms at all, rather they present with more neurological focused ailments.

I went gluten free almost immediately. Strict. Two weeks in, I got worse, and even got a weird, though impressive, itchy rash … cut to almost 4 months of being completely gluten free, however, and I can honestly say that all the symptoms I had experienced prior to going gluten free are better, if not essentially gone. On rare occasions, I have felt the subtly of numbness come back … I panic … then try to think about where I could have ingested gluten. Each time I was able to narrow it down- a bullion cube with barley extract one time and a marinade with soy in it another time…

When I went to my doc to discuss my thoughts about celiac and my family hx & other supporting arguments, I had another impressive rash (thankfully, something tangible for him to see that something is not right!) .. he decided to test for a couple of the celiac markers, but by that time it had been 1.5 months of a strict gluten free diet and it was an incomplete panel. So when I heard the markers were negative, I was not surprised. However, I took a genetic test for celiac and was found to be in the highest risk for developing the disease. Though the genetic test doesn’t diagnosis, it can help guide diagnosis in the context of presenting symptoms.

At this point, I know I am either celiac or it’s a gluten sensitivity. Either way, this former gluten loving lady will continue to avoid all things gluten. If my symptoms return while being strictly gluten, then perhaps it is something else. But each day without SFPN and all that goes with it … is well worth passing up all the delectables that come from gluten.

In the end, I do hope I have helped someone. It’s a very scary, lonely place to be … when you know something is wrong, but those in the business to help you figure it out aren’t willing to look outside of the box.

OMG I can’t thank you enough. I’m two months gluten free, but can’t say “strict.” That starts today. I have the dang itch! And the numbness creeping up both legs, getting worse. No pain, yet, but am waiting. All blood tests are normal but unlike you, neurologist DID diagnose early neuropathy with an EKG, so a bit sunk there. Still think I can reverse this “idiopathic” thing so I also read, read, read desperately into the wee hours of the morning and hope beyond hope. I’ve read all the gluten tests are non-conclusive, including the genetic one, so haven’t bothered.and there is no evidence of gluten issues in my family. For me, GF is a shot in the dark; there is nothing else to be done that I’ve found yet. I also am healthy weight- actually losing is a concern now, really active, never a drinker or smoker, ad nauseum. Can I ask: did you avoid ALL grain? Dairy products? Anything else? Yeah, even with all the forums out here, feeling alone in this search. And as noted, quite scared. Thank you again for sharing your experience. Your story MAY help me!!

I’m so glad to have given someone hope. If it is celiac or gluten sensitivity that you are experiencing, you really MUST MUST be strict, as just a whiff of gluten can exacerbate symptoms or have them recur. In my case, it was the barely extract in the bullion cube and a smidge of soy sauce in a marinade. For me, someone who lived on all the delectables that gluten makes yummy, it hasn’t been difficult, and I’m surprised about that. It’s more an intellectual craving for those things then a physical one. If you are a cook or a baker, then you will have no problem making gluten-free things. Savory is super easy, it’s the breads, cookies, and the like that are more challenging. Even if you aren’t a whiz in the kitchen- which I am not AT ALL!- you will find a way, as feeling better is a great motivator to avoid the one thing that I personally in any other circumstance couldn’t have given up! I gave up wheat, barley, rye and oats (but only oats that I can’t confirm came from an uncontaminated source). I eat other non-wheat grains. Also, I don’t tend to go to restaurants unless they have a gluten-free menu simply because there is hidden gluten in almost everything processed!

Also, you MUST MUST give the diet time. I got much worse before I got better with exacerbations of existing symptoms which included a wonderful addition of burning sensations over my whole body and a new rash. But I would say by 2 months I no longer felt the bugs on the bottom of my feet & the humming/vibrations, the numbness in my face and arms, and the nausea were essentially gone. The numbness in my leg took longer to get better and it’s characteristics changed as time went by, but I chalked this up to what a healing nerve might feel like and the time it might take to heal. The shoulders have improved to the point where I can stretch without 10/10 pain.

I have seemed to develop a new dairy sensitivity or allergy and I had another episode of what my doctor said was urticaria (though what my body was reacting to, I haven’t been able to figure out). So I may have developed some new sensitivities with this whole thing. The dairy sensitivity is something that is manageable and I cannot think of giving this up at the moment until I am sure gluten was the culprit.

Even though it is in my family, it felt a real stretch to even consider it a gluten problem as the only GI symptom I had was nausea, but none of the other debilitating GI symptoms that classically define celiac. However, the research I have done suggests that adult-onset celiac can present with neurological symptoms without GI symptoms and that they are thinking the neuro symptoms may be the “canary in the mine” to the onset of GI symptoms. You are right, the blood tests are unreliable and the genetic test doesn’t diagnose, though the genetic test is reliable in helping determining your genetic risk of developing the disease. In other words, it can help rule celiac out and help guide diagnosis in the context of symptoms after having gone gluten free. For me, even with my family history, the genetic test results, and the rash, the diagnosis of celiac is only presumptive. So, it doesn’t matter what I call it. I just know that being gluten free has helped me immensely … and only time will tell if gluten is really the problem.

Remember “idiopathic” just means they haven’t figured out the reason behind the illness. In all of our cases, there is a cause for our symptoms. Even if it’s not celiac in both of our cases, it very well could be a gluten sensitivity (which in my anecdotal case is, in the very least). What makes this possibility more concerning then even a celiac diagnosis, is that the understanding of this is in it’s nascent period. So we don’t really know what this means in terms of risk to our long-term health and our ability to function both physically and mentally in the future. And that is scary. As horrible as celiac is…. and it can be abjectly so … the disease, it’s treatment, and the risk it portends is more thoroughly researched and much better understood.

Again and again, THANKS!! And YOU know how much this has helped! I’m reinvigorated on my mission, one of being GF as well as the more important one: of hope. Tough time to be so strict, going into the holidays, but as you noted, the diet really isn’t otherwise so tough. Actually has made me eat so much better, which I do believe is another facet to resolving this PN dealio. This also makes the journey more tolerable; I was told I wouldn’t know if GF worked for up to, or longer than, a year. In my life now, no problemo. Along this adventure, I also have learned that medical practice is just that- a practice. I, we, are truly our best advocates, and I often enter a doctor’s office with as much info as I leave with. These visits have become conferences at best. Love reading your posts (to me:o). They confirm and build on my thinking. Best to you and yours, thanks again, and here’s to health!

I by-passed two major health hurdles once I discovered I was gluten-intolerant (gene-tested). Twenty years ago, I was diagnosed with fibromyalgia by Mayo Clinic/Jacksonville. I used to teach college but, sadly, had to quit. Instead, I started writing … anything really… poems, novel, scripts, the best I could do after a few years of being virtually comatose. That creativity at least made me feel somewhat human. Fifteen years ago, I started experiencing discomfort in my lumbar area when sitting at the computer. At its worst, that little triangle at the tail end of the spine (no pun intended) would puff up. I started noticing my left leg dragging when I went on walks and, sometimes, weird tingling and shooting pains up the leg. An MRI showed a cyst impinging on a nerve. The neurologist told me I needed surgery and, if I didn’t have it, I would eventually become permanently incontinent and paralyzed from the waist down. At that time, I was moving to CA from FL and decided I would look into it when I arrived. I researched and researched any way I could deal with this new issue without surgery (as the cyst’s location required a Z cut into the front of my body; it couldn’t be done from the back). I was preparing myself for a new procedure by a CA doctor I discovered: an injection of a glue-type substance that stopped the cyst from growing … the only problem was it could caus meningitis if pieces broke off and traveled to the brain. I was willing to risk that rather than the surgery, which, I read, had totally disabled some who had it. At this juncture, a friend of mine told me she worked with someone with fibro who helped himself immensely by going off gluten and dairy. Before I set up that cyst appt., I had myself gene-tested. Within 3 days of being off gluten, I felt like a different person. I literally went dancing that night! My widespread pain had vanished. Although the exhaustive fatigue, brain fog, etc., didn’t go way, it was still a major change in my life. I could function better than I had for 9 years. Even better, I also discovered, almost miraculously, that my cyst symptoms vanished as well! I could walk again without my left leg dragging or feeling those weird shooting pains. It has been 12 years since being off gluten and dairy; the cyst and its symptoms have never returned.

Just a quick one , I have just read your comment & the various symptoms you mention lead me to ask you whether you have been prescribed fluoroquinolone antibiotics at all ? , either recently or perhaps sometime in the past. These so called antibiotics are not your usual penicillin, but instead they are extremely dangerous topoisomerase inhibitors , they are actually failed chemo drugs masquerading as ‘ antibiotics ‘, & they are devastating countless numbers of lives.

Please note that our allopathic Drs worldwide invariably do not have a clue just how dangerous they are, despite the FDA yet again being forced to update the warnings on them.

Fluoroquinolone so called ‘ antibiotics ‘ include those such as Cipro , levaquin , Avelox, & there are various others including generic versions, topical versions, & ALL FQs whatever mode of administration, can result in exactly the same damage . I strongly recommend googling fluoroquinolone toxicity, fluoroquinolone associated disability ( FQAD ) to learn more, in fact i would recommend that everyone who comes across this comment does so.

Thanks for the note about antibiotics. I haven’t taken any for at least 10 years, and have no idea what I might have taken before that. This is FANTASTIC info for those who are not in the know yet; unfortunately, it never seems to seep down to those unknowing and unsuspecting.

My initial post was about loosing the feeling in my feet. All the nephropathy symptoms were definitely no fun, for many years. Going GF has reversed the loss of feeling in my feet. Not 100%, but sufficient to walk around the block without feeling like I might stumble and break my neck. I suspect I spent too many years (66) getting to where I was before going GF. I knew many years ago that I probably had a problem with absorption of the nutrients in my food. I only changed my diet to more nutrition for the calories. After taking some Biotin for other reasons I started feeling a change in my feet. That started my research online that led me to Gluten Intolerance. I wish I had known years ago. I have suffered a lot of things that may well be related including lots of chronic pain. When the feeling started coming back in my feet I felt more pain, but I expected that. The pain has been slowly subsiding. The pain probably will not totally go away until I am 6ft under. That is the problem with not discovering Gluten Intolerance until rather late in life.

I am so sorry, but this is complete b******t. I understand that the stigma surrounding intolerance not good: gluten intolerance is real and needs to be addressed. But Celiac has ruined my life. I can’t eat out with friends. No one can make me dinner except for myself. I have extreme anxiety otherwise, to the point where I give myself psychologically induced nausea. Contamination HUGELY increases the risk of cancer, particularly leukemia. I am nauseous everyday of my life though I have been gluten free for years. I attend college and throw up during class- but I always return. It’s is my life. The results of gluten intolerance are terrible, but are no where as damaging or permanent as those caused by Celiac. It is completely ignorant to claim that gluten intolerance is more damaging than Celiac. The gut damage caused by Celiac is often permanent. I am extremely malnourished and underweight- I have been at a healthy weight my whole life. I ran six miles a day. I can barely walk to class now. I have to take breaks and sit down on the curb. I really appreciate your bringing attention to gluten intolerance- it needs to be done. But the specific part of the article I am referring to is COMPLETELY wrong.

So you don’t think it’s a problem at all that people (like I was) are just randomly and seemingly getting drunk all the time on gluten (the growing term is ‘glutened’) without this clear problem being traced back to their gluten-filled diets?? As though people are just supposed to tolerate their random sleepy sessions, blame it on age maybe. When people like me go to the doctor, the doctor won’t run tests on us for NCGS because: A.) They don’t believe in it. B.) If you don’t ave Celiac Disease, there must be nothing wrong with you in relation to gluten and C.) ‘We can’t test for NCGS even if you have had been told you don’t have Celiac’. At least YOU as a bonefied Celiac can get LOTS OF HELP from other people who have your condition, even grants, moral support, public awareness that recommends for gluten-free food to accommodate people like you. People like ME have NO CHANCE because we’re not diagnosed with anything. It’s just assumed that we’re lying about feeling drunk after months (even years!) of tracing our intolerance to gluten! I swear to God, this NCGS is a MASSIVE HIDDEN PROBLEM, misses, and you need to get your head out of your Celiac arse and help those, like me, who have FUCK ALL THE HELP THAT YOU HAVE!!!

And FYI, I actually have Hashimotos Hypothyroidism which is an automimmune disease flared up by gluten proteins like wheat, barley and rye but because it’s not Celiac Disease, no-one cares! No doctor told me to stop eating gluten when I was diagnosed even though it’s evidently been slowly killing me for years! This is the same situation with NCGS but they can’t be diagnosed (as of yet.) You should feel bad for them- I KNOW I DO. You think I can go out eating with friends, Jessica? You think I’m not exhausted every day? I could go on but I don’t think you know anything about Hashimotos Hypothyroidism. I have extreme anxiety, Jessica Rae- I feel cold all the time, my metabolism barely works, I’m prone to getting massive goitres (the size of frickin’ cricket balls) at the front of my throat, I can have seizures and go into comas if I don’t take Levothyroxine for long enough periods, I gain weight like it’s nothing because of my lack of metabolism, I’m infertile, my gut is irreparably damaged- the fili in my gut lining can’t absorb nutrients! The list goes on. I was joining the British Army at one point, used to run 5 miles a day up and down steep hills. You think I’m a lazy git? You think your Celiac Disease is worse? Imagine being under nourished and over weight even though you clearly under eat because you’re trying to join the Army?! YOU HAVE NO IDEA WHAT OTHER PEOPLE FACE! NO doctor told me to quit eating gluten when I got diagnosed with Hashimotos! I had to go and research for myself but at least I had the terms ‘Hashimotos Hypothyroidism’ to follow. People with NCGS, who can’t be diagnosed, have got nothing to go on apart from clearly having a gluten intolerance that can just be brushed off as being bullshit.

Thank you sincerely for sharing your situation. The debilitating effects of gluten on gluten-intolerant, non-celiacs are made clear in DANGEROUS GRAINS by James Braly and Ron Hoggans. Appendix D cites 187 “gluten-associated medical conditions.”

I am sorry you felt so offended Marley, but I truely believe you misread the tone of my comment (you may have found my language extremely offensive, and for that I apologize.) You clearly have more than gluten intolerance, and therefore I was not referring to your condition. As I said, gluten intolerance is very serious and needs to be addressed as a very real issue. But to claim it is more damaging than Celiac is absolutely ignorant. I am not saying that gluten intolerance doesn’t deserve more attention than it is currently getting, as it clearly very much does. I do not believe it is true, however, that gluten intolerance causes more damage than Celiac disease over the long term. I do not have gluten intolerance. I have Celiac disease, so I know what it is like to have gluten intolerance- only there is an autoimmune reaction, similar to your condition. Gluten intolerance does not cause the same damage as an autoimmune reaction. Yes, it negatively impacts people’s lives in a terrible way. But to say the damage caused by Celiac is less than that of gluten intolerance is wrong.

“You think I can go out eating with friends, Jessica? You think I’m not exhausted every day?”- I do not know your own struggles with your conditions. I did not say that gluten intolerance does not cause these things. But the sensitivity and severity caused by Celiac disease is on a higher level than that of gluten intolerance.

“You think I’m a lazy git? You think your Celiac Disease is worse?”- No where did I say anyone is lazy- living with gluten sensitivity is one of the hardest things a person can deal with. But yes, I think my Celiac disease is worse than gluten inolerance.

“So you don’t think it’s a problem at all that people (like I was) are just randomly and seemingly getting drunk all the time on gluten (the growing term is ‘glutened’) without this clear problem being traced back to their gluten-filled diets??”- “I understand that the stigma surrounding intolerance not good: gluten intolerance is real and needs to be addressed… The results of gluten intolerance are terrible, but are no where as damaging or permanent as those caused by Celiac.” [From my first comment. I clearly believe this is a serious issue.]

“At least YOU as a bonefied Celiac can get LOTS OF HELP from other people who have your condition, even grants, moral support, public awareness that recommends for gluten-free food to accommodate people like you.” -None of those things will ever allow my permanently damaged gut to heal. None of those things will relieve my symptoms.

“I swear to God, this NCGS is a MASSIVE HIDDEN PROBLEM, misses, and you need to get your head out of your Celiac arse and help those, like me, who have FUCK ALL THE HELP THAT YOU HAVE!!!” – I also agree that this is a massive issue. I ALWAYS offer advice to those who are having symptoms similar to mine- I always tell friends to speak to dieticians and gastroenterologists.

I’d be open to changing my mind, honestly, if you provided a more intelligent argument. But right now, I really have seen nothing to change my thoughts. Rather, I don’t want to engage in conversation with you or other gluten intolerants for of being lashed out at. Rather counterproductive, no?

And I find it rude that I in no way was trying to target or offend anyone, yet you began to personally attack me. I was simply stating my opinion and my experience. And I’d love to hear responses! But there’s no reason to be immature and offensive.

I absolutely agree. I too have real diagnosed Celiacs with a Celiac mother and was very angry to see the title of this article. I didn’t have to read it to know it is total BS. I’ve had symptoms all my life. I know what you are going through because I too cannot eat at people’s houses or most restaurants. The only true way for me to feel safe is to make my own food. Anxiety with food choices happens to me too. I also think gluten free should be redefined as no part per million because I cannot have any part per million. Corn and quinoa are also a huge no for me. Corn was domesticated from a grass similar to wheat and contain a gluten tht is too similar to wheat. It angers me that corn is a common ingredient replacement in “gluten free” products. It gives me the same symptoms as the other gluten foods. Also, corn starch/gluten is hidden in most pain pills and the cheap vitamins. Celiacs complain that they are not getting better. These and hidden gluten are the reasons. If the ingredient says *spices or natural/artificial (insert type here) flavor, then there is gluten in it. The FDA and typical physicians know close to nothing. Best to get a DNA test too. Mine said I have 2 of the 3 celiac genes and a 90% chance of developing it.

Hi …sounds like you are having an awful time. I am not celiac …no igA antibodies…but I do have an uncle who does have a celiac diagnosis. I have IgG antibodies to wheat /gluten (and soy) and I think it gave me awful migraines.(doctors do not agree) I have gone gluten free and got rid of the migraines….changed my life. I also have problems with coffee and coconut….and all this seems to have got much worse as I reached my late 40s (although I have been headachy all my life) I am self diagnosed….and doing better now than I have in years. Going gluten free is hard work… the stuff turns up everywhere (malt…maltodextrin…..dear me I have made lots of mistakes) I hope you find the answers to your issues

I’m off to the doctor on Friday. I was diagnosed with eczema about 15 years ago that was being treated with a prescription cream with little effectiveness. I was told it was stress related. Over the years, I’ve had chronic nausea, a foggy brain and diarrhea often…all which I just assumed was stress. Well, 4 days ago, I had a bowl of cereal and 20 minutes later was covered in hives. Then the pukes hit. Looking online, my symptoms indicate either a gluten intolerance or celiac disease. For 2 days, I consumed nothing with gluten and the rash started to fade. This morning I had Chex and milk…chills, horrible itching and the pukes again. Now I’m reading I could also have a lactose intolerance. Now? At 39? Weird. I’m getting tested because now I feel like puking no matter what I eat and the rash is out of control. I think my body has just had enough of me ignoring my symptoms and is totally revolting on me. I pray for everyone with any kind of food allergy. This is miserable and scary.

Looking back, I believe I was exhibiting gluten intolerance symptoms for quite some time – the typical bloating and gas, etc. So eventually, I thought I would try to keep wheat out of my diet, and largely did but thought that eating it might not hurt occasionally. One of my knees was starting to hurt – it became very swollen. Around this time I went to stay with my daughter for a few days and became tempted to eat some of her delicious home-made bread, although normally at home I hadn’t eaten bread for some time. When I returned home, the knee was painful enough (I had to use codeine for pain relief), that after a couple of days I finally went to the doctor. Subsequent blood tests revealed a very high rheumatoid factor reading. Immediately after returning home from my daughter’s place, I had completely eliminated wheat from my diet, and as well kept sugar to a bare minimum. What a difference – within days, the swelling in my knee was going down! Recently, after visiting family and being tempted to eat food labelled gluten-free and then also having a little of ordinary wheat-based food I suffered from a nasty rheumatoid arthritis flare up. I had been becoming a little complacent up until recently, thinking a little now and then would be ok – I could “get away with it” so to speak. But it’s time for me to get really serious about avoiding wheat completely. (I have never had any medical testing for coeliac or NCGS, but I think my experiences speak for themselves. What do others think, please?

Hiya … the doctors do not agree with me but gluten gives me migraines (I do not have IgA antibodies and so do not have celiac) But I do have IgG antibodies to wheat/gluten. Interestingly I also have a problem with my knees – cartilage under kneecaps is wearing away (this does show up on scans) I have read everything I can on this subject…there are schools of thought which say gluten can cause this…but there are also schools of thought that say that ibuprofen (that you take for all the headaches) can also cause it…..who knows…..I have gone gluten free and ibuprofen consumption also much reduced

I also had 1-3 monthly classical migraines (neon zigzags, 20 minutes of half vision, unrelenting pain for 3 days) until finding I had the gene for gluten-intolerance and got off gluten & dairy. I now have 1-2 migraines a year, and they are light-weight by comparison. I also was told I needed a dangerous major surgery for a cyst on my lower spine. The neurologist said I would become incontinent and paralyzed if I didn’t have the operation. Very fortunately for me, I was getting off gluten at the time of diagnosis. Within weeks, all my cyst symptoms went away. It’s been 10 years and everything is still fine. The surgeon couldn’t believe going gluten-free made the difference. She said, “That’s impossible.”

I have a suspected case of Gluten Ataxia where the autoimmune response happens in my cerebellum. I collapsed on the street around 3 months ago unable to coordinate my body to walk, and lost speech. after 2 weeks of bouts of severe ataxia someone suggested me to go GF. I’ve been on GF since but still trying to learn how careful I need to be with food. If I cook my own meal I’m fine however I discover that my body is getting increasingly sensitive to gluten longer I’m on GF. I get glutened several times when eating out in a non 100% GF restaurant, but ordering GF food from GF menu. Now I realise that I cannot have any trace gluten so I’m only comfortable eating in 100% GF restaurants. I have very mild gastro symptoms but very pronounced gait ataxia, and dysarthria. I’m still waiting to see a neurologist in the UK but the waiting time is long. I did get tested positive for AGA IgA but not TG2. I’m trying to minimise consumption of GF products since my condition is still unstable and I dunno what my tolerance level for trace gluten is at the moment. My attacks are episodic and definitely linked to environmental triggers hence I suspect food related. I can eat dairy without issues though. The only trigger at the moment seems to be gluten. I have extreme fatigue, poor attention, sensitivity to light and movements when I have an episode. I dunno how rare my condition is but I’ve not met anyone with gluten ataxia yet… kinda lonely not being in a community haha. I think ppl with gluten sensitivity should cut out all gluten cuz u never know whether will turn into a serious autoimmune disease like mine…before this happens I’ve been dealing with bouts of unexplained fatigue and depression for a few years. Since adopting GF diet I have not had such terrible mood swings.

I had a serious dairy problem and eliminated my gut discomfort by eliminating dairy completely. I also suffered from serious menapausal symptoms to the point I felt like it was ruining my life (home and work). I was only 35 when this began. I am now 42 and after complete desperation cut out all gluten as well as continuing to be dairy free. Much to my surprise and excitement, my symtems completely went away after about 4 months. I mean soarness everyday, hot flashes, terrible night sweats nightly, and missed periods for months. Gone. I am so relieved. I was tested for celiac and told I do not have it. I did this experiment on my own. People think I’m just a paranoid eater and I do feel awkward but I learned to plan ahead. I look at menus beforehand and act as normal as possible in group eating times while sticking to my diet. I wish someone would give me the proof that everyone else seems to need but for me alone I know I have a problem with gluten. I do feel alone with my problem but am ecstatic over the relief. I’ll never eat it again if my issues stay away.

Is it better to have occasional gluten to lessen the immune reaction of avoiding it completely (but having inadvertent exposure) if you’re not celiac but have ncgs? There is the concept that moderate occasional exposure is better bc the reaction is less extreme than if someone avoids completely but gets glutened eating out

I’m so glad you asked this question, Margaret. I have Peripheral Neuropathy and all gluten tests come back negative. I’ve never considered that I had any sort of gluten intolerance before developing this, and still don’t, but for the prognosis of PN, I HAVE to try being gluten free. I’ve been on a GF diet now for 3 weeks (big deal, I know) and don’t expect PN to improve (yet, but praying!). But am curious as to what others say to this question. I guess this sounds like I want my cake- pun- and eat it too. :o)

I also had PN symptoms for a couple of years, on and off. Due to other issues such as unexplained weight gain over the course of 5 years, upper respiratory issues, and repeated sinus infections, I tried a gluten-free diet in the summer of 2014. After 4 weeks, all PN symptoms were gone!

I never bothered with the Cyrex Labs test because after living through the results of GF first-hand, it wouldn’t really matter to mean if the tests came back negative.

I did not know there was a gene test available – thank you Laura. The gene test is interesting to me, and I will look into it further. If anyone knows more, I would appreciate your input.

No being gluten free is 100% or nothing !There is no middle ground. Even the slightest trace will cause damage. I once had a bad reaction to kidney beans due to contamination from grains grown nearby. So if is not certified Gluten free I skip it!

I was diagnosed with celiac disease in 3rd grade. Before I was diagnosed I was always sick and had already been in the hospital 3 times. Gotten blood removed every day (seriously.) until my arm started turning purple where they injected the needle. Finally I was diagnosed with CD it sucks. I love food so much that whenever my family orders Papa Johns pizza and I’m stuck with sandwiches and gluten free pizza. ;( Sometimes I sneak a piece or two ? Later in 5th grade my immune system was still pretty weak from CD since I had wheat all the up until 3rd grade which is pretty long… I got Walking Pneumonia (It’s called that because you can just walk around with it and not know that you have WP) Which weakened my immune system even more. So much, that I fell a victim to SJS (Steven Johnson Syndrome) I got blisters everywhere my eyes had blisters in them and they were red and dried out. My lips weren’t stuck together by blisters and I had to pull them apart which hurt like heck!! I had a feeding tube put in 3 times because I puked it up on accident a couple times. I was on morphine and it upset my stomach that’s probably why i puked. After 2 and a half weeks I finally got out of the hospital and went to school the next week. I ocasionally get sick from wheat. You can get cancer and even diabetes from CD. There are also many symptoms such as indigestion, diarreah, nausea…etc. If there’s something worse than this. I feel for them ?

I suffer from celiac disease and whenever i get wheat or gluten in my system i puke blood for over 24 hours without a hospital i will die from this and it’s really ignorant of you to claim that non-physical reactions like these stated are worse than dying by puking until you die. Between the ages of 6-10 i got sick over 20 times and had to go to the hospital constantly since people didn’t take it seriously and pathetic articles like this one are really not helping.

Albin, I don’t believe the doctor was trying to minimize your condition–it is a difficult life to lead, that of a Celiac. I feel for you. I simply believe he was attempting to use a rhetorical technique to demonstrate to others the severity of the gluten intolerance compared to a condition that others already understand to be debilitating–Celiac’s. Instead of dividing, I believe he was trying to unite. We all need to support one another in this road of perdition called life.

While I never vomited blood–how traumatic for you– I suffer from a dairy and egg (possibly gluten, which I am exploring now) that caused me with nausea and vomiting which made my daily life dysfunctional. Instead of a few episodes of near death issues, I experienced a decade of constant torture, literally living in fear of what each day would hold for me, wondering why this all was happening.

I believe that both ways of living are detrimental to our human experience, and anyone that tries to make it better for someone else isn’t attempting to sow discord in another’s life as a result.

Totally agree with you Albin. I have severe acute ulcerative colitis and I’ve been on a strict SCD diet for a few years now. Wheat along with corn, sugar, and chocolate products cause me the worst problems. I’ll uncontrollably lose blood and be in severe pain that takes usually takes a prednisone burst and days of not eating to get through.

This whole nonsense of poor gluten intolerant people makes it hard for people with actual allergies to be taken seriously. If your intolerant, you avoid it. If your allergic it’s an actual medical issue.

I’m sorry your “intolarance” makes you uncomfortable, but If you’ve never blacked out from pain while using the bathroom or know what’s it’s like to be in a state of constant anxiety that you will lose control of bowels at any moment I don’t really think you can say it’s on the same level, let alone worse.

I can totally understand Albin’s position. People don’t take it as serious as they should because of these garbage articles.

Gluten takes a while to build up in my system when I go off the wagon. I tell myself it’s not so bad, but then after a week of sporadic consumption, the back of my neck, lower scalp and upper back is broken out with cystic acne. It happens EVERY time. It took me a while to realize that is also causes me to be extremely tired, irritable and have no energy. When I stopped and paid attention to the patterns, it was so obvious. And the hard part is that I can’t just shake myself out of it. It takes me a week or two to get the gluten effects out of my system. So I’m stuck with exhaustion, depression and nasty acne for one to two weeks and can’t do a damn thing to change it. I just endure it and cut out all gluten until I feel back to normal. I’ve never heard of anyone having it affect them like this. This is just what happens to me.

My son has a gluten sensitivity that seems to get worse every time we are 100% clean and the something accidentally happens. We have noticed fhe same 1-2 weeks it takes to clear out and his behavioral symptoms to diminish. He will “script” or repeat himself, exhibits OCD with liquid, bouncing off the walls, and has extreme difficulty talking at the correct pace. It is one hundred percent attacking his brain. Anyone the can provide and insight to getting gluten out of his system faster is welcome to comment. Thank you!

I get this same thing! You are NOT alone. Same pattern and similar symptoms. There is no one to back this up and I sometimes feel paranoid and very alone. But having almost totally disabling chronic fatigue syndrome that again no one will diagnose and treat means I HAVE to admit to myself that it is gluten, sugar and milk that ate doing this! My sister is diagnosed as Celiac Disease and her effects are much like mine. But I have been told I do not have it. So either gluten intolerance is a serious health problem in itself or I am getting up to getting full blown celiac disease! Either way..am I really going to continue to take such a gamble with my health and life. I say no. Gluten sensitivity haters do your worst. I don’t care anymore. It’s my life.

I know you posted this a few months back, but I have the exact same symptoms you.

When I eat gluten-ous foods (that are also usually processed and high in sugar) for a week or two, my body always breaks out and I sink into a depression. My face never breaks out, but I get zits on my back, neck and elsewhere. I always feel a general sense of hopelessness, coupled with shame at the acne.

Sugary alcoholic beverages (cocktails, wine, etc.) also seem to push me over the edge and spur a huge breakout.

I view it as my body ridding itself, physically, of something that it deems poisonous.

I’ve found a few ways to cope with it– ingesting high amounts of chlorella in water to “detox”, avoiding processed carbohydrates and sugars, taking b vitamins every morning to help with the depression, and drinking a lot of kombucha and other fermented drinks to help cleanse my liver and detox my system.

I wanted to thank you for posting your comment, Sarah. Only recently have I dealt with the acne and crippling depression during “cheat weeks” or vacations where I’m lenient with my diet.

NCGS absolutely does exist and I think I am a typical example. I have had bloating and stomach cramps all my life (also migraines as an adult/cyclic vomiting in childhood). I had difficulties conceiving and asked to be tested for Coeliac because I thought it could be linked. I tested negative and was told not to alter my diet. Time went on, I had two sons and the GI symptoms got worse. Despite being pretty fit (I eat healthy and have run half marathons), I dressed in baggy clothes because of my ‘baby belly’ – constantly bloated but blamed it on being post-pregnancy. The morning dash to the toilet got earlier until I was waking at 5am and had to run to the bathroom. There would be more dashes through the morning. I started having painful haemorrhoids and bled a lot. If I ate a sandwich at lunchtime I had to undo my trousers for the afternoon. I missed a couple of days from work, doubled over with stomach pain and I had enough. A year ago, I stopped eating gluten. My pre-pregnancy shape returned within days (called for a whole new wardrobe!), and the other embarrassing symptoms have gone. For the first time in my life I wake without knots in my bowels and I get up in my own time. (BTW – I am curious to see the mention of Austistic Spectrum disorders in this article as this applies to me too).

Alright, I’m going to throw my 2 cents here! I am from KSA and I’d lived 5 years in the US to complete my Bachelor’s! 5 years in the US were hell as I had many health problems ranging from headaches to digestive issues. I came across Gluten sensitivity as I explored my issues online thoroughly when I was there but ignored it due to my studies. Two days ago I said I would give GF diet a try that include zero bread, cakes or anything that I suspected had gluten! What a surprise!! After two days most of my issues DISAPPEARED! No headaches, no gastritis, no gas trapped in stomach, no irritability in the morning. I am the old me! I am starting to write a small book about my experience because here in the SA, there is not a much of awareness about Gluten sensitivity. BTW, I couldn’t take a biopsy test because I have no insurance and so I am going through self-diagnose. All in all, it wouldn’t hurt to give this a try and I will continue my diet and record my observation along the way. I feel sorry for most of the gastroenterologists who don’t include this issue in their diagnosis but I think that newly graduated doctors will improve. Sorry about the long message but hopefully it reaches listening ears.

My partner is NCGS is sip spect but we do not call it this.. One small amount of gluten or lactos gets into her diet and she is bed bound with stomach cramps and generally feeling ran down for a day. Is there anything she can take to stop the cramps and run down I’ll feeling if she does mistakenly eat some gluten or lactose. She has been tested do CD and it came back negative. Any ideas

Yes, activated charcoal and I would also drink lots of water with lots of vitamin C (I like Alive! whole food C powder) and lemon essential oil. It helps me any time I feel like I’m reacting to something.

Yes! There is help for this. Above all, she should avoid all gluten (wheat ,rye, barley [which includes malt} and dairy and any derivatives thereof. Cross-contamination is a very real problem. It happens everywhere, even when we are explicit in trying to explain how the food should be prepared in any restaurant. It can happen because of cooking surfaces and utensils. Even the minutest residue in the tiny scratches on metal cook surfaces can hold (and administer) gluten. The wonderful thing of our time now is that there are enzymes that one can take before eating out. Look in a health food store for capsules which contain several enzymes for the purpose of gluten cross-contamination. It would actually be a good idea for your friend to take it at every meal for a while because of recent or repeated contaminations.

Hi Amanda, The enzymes you’re talking about like Gluten Cutter only work for people diagnosed with Celiac, not Gluten Intolerance. I have gluten intolerance, gastritis, hiatal hernia and a few other things that I don’t remember at the moment. Anyway, I was taking Gluten Cutter and it wasn’t working, so I tried something similar from Swanson’s Vitamins. I talked to my gastroenterologist and he said those won’t work for gluten intolerant people because it isn’t a protein (I think) that has to be blocked. (I have sleep issues and it’s after 4 am and I’m about to head to bed, so please excuse me if I put the wrong term.)

My best friend has Celiac and Gluten Cutter works for her. Other brands did not. Gluten cutting pills do not work for everyone with Celiac as her research showed, but she was willing to try it and it happened to work for her.

She feels bad for me that I can’t use it and that research is targeted for Celiac and not for gluten intolerance.

I am going back to vegetarian but will also try to add some vegan as well. Some paleo might work but not the meat since it seems to be too hard to digest.

Hugs and prayers of healing to everyone Celiac and gluten intolerant.

I have all the symptoms of Celiac and my doctor said my treatment would be the same if I had been diagnosed with CD.

Hi Tambra, So sorry you are having trouble sleeping. I find it very curious that a GI doc would say that about gluten “cutting” enzymes when we were all given them by our functional doctors for, not only the cross contamination outside the home, but it was used in greater quantities during the elimination diet in the beginning to heal our guts and get the gluten out. It is called Gluten Flam and it really works. None of our family has cd but we are all gluten intolerant. I still feel that funtional docs are generally more knowledgeable than GI docs unless your gastro doc has actually been reading the research and actually works with gluten intolerance/celiac disease. The other thing is that we (NCGI & CD people) should NOT be eating out much at all. Any contamination is BAD. Also, if you can’t digest meat well (and I am the same) take HCL at the same time as you are eating. –and only eat organic meats.

I was diagnosed with coeliac disease about 10yrs ago via a intestinal biopsy. I continued and still do drink beer. I recieved negative coeliac blood tests for a number of years after until the cost to the practice said they would no longer do it. I am still mystified as to why I have no symptoms following beer consumption although I avoid gluten everywhere else. Maybe I dont have it. Any thoughts, also my annual blood tests show everything to be fine?

My daughter was diagnosed with Celiac five years ago. I was tested at the same time and did not have celiac. I ended up going GF because we wanted to keep a GF house for my daughter. This past week I drank tea that ended up having gluten in it, and for six days, I took a vitamin that had gluten in it(didn’t read the label well). I had horrible skin and GI symptoms. I’m wondering if this is enough gluten to trigger Celiac? I know that any tests that I take now will not give me any results, so I’m not sure how to proceed.

Its possible to have celiac run in your family and gluten intolerance separately. Many people (such as myself) do not find out of gluten intolerance until going off gluten and then going back on (long story short I was in extreme stomach pain and had dirreah after just three days). However, anything can trigger celiac—I have a friend who cannot have people who have touched gluten touch her food. If you are a celiac this definitely would have triggered it.

I’ve been battling this gluten wheat thing for years. I’m really sick and tired of people telling me I’m crazy. I did the biopsy and the doctor told me I was def not celiac and I’ve been told by more than one doctor my issue is mental illness. Now another doctor lead me to do a blood test. I am lactos intolerant 100% and coffee does irritate me. It’s really tough to not eat gluten when my boyfriend orders a pizza so once and a while I’ll eat a slice or two and then feel dizzy and rotten. Gluten is addicting but I feel way better without it in my life. I would just like some answers so I can move on with my life because I don’t want to have to worry about causing harm in my body because of wheat. This is so annoying I never thought eating could be so annoying. I love food 🙁

Yes, get the gene test. My functional medicine doctor (Peter Osborne) doesn’t use the Cyrex Lab test. He only uses the gene test. I had 2 copies of HLADQ-1 which is associated with NCGS. 2 and 8 are associated with Celiac. Also, he says true gluten free excludes other forms of gluten that are in ALL grains. I get a more noticeable reaction from rice, oats, and corn. You can order the test from his website and then know for sure. If you have one of the genes then you have to be grain free the rest of your life and work on healing the gut and correcting nutritional deficiencies grains have caused. It has really helped my family to know that it is genetic. Now I know all of my kids have it (that explains a lot). My husband isn’t so annoyed with restricting my kids’ diets. Relatives don’t think I’m so ridiculous. Yay!

Don’t do it!! Don’t eat your boyfriends pizza –ever! If He’s ordering, you’ve got to make your own or make something else you love to eat. I love food, too, but your (and mine, too) non-celiac gluten intolerance can still lead you straight to autoimmune disease! You have GOT to decide to be healthy and swear off ALL gluten forever. Probably not lactose, but casein –coffee in a cross reactor as well, so do not eat or drink anything with casein (all milk protein) or coffee. You need to look out for number one!! You are not crazy.

I was diagnosed with coeliac disease about 10yrs ago via a intestinal biopsy. I continued and still do drink beer. I recieved negative coeliac blood tests for a number of years after until the cost to the practice said they would no longer do it. I am still mystified as to why I have no symptoms following beer consumption although I avoid gluten everywhere else. Maybe I dont have it. Any thoughts, also my annual blood tests show everything to be fine?

This is the most fascinating read! I am also self diagnosed from a process of elimination over the past four years, after suddenly realising my diet held the key to many years of depression, unexplainable mood swings, nerves, off the scale panic attacks & paranoia. There wasn’t a doctor interested in my findings but always there waving the anti depression prescription at me! I refused to take the tablets which frustrated the medics. A CD blood test and camera did not result in a positive result but I had already stopped the gluten and could only manage a small amount each day for a couple of weeks before the test. Removing every trace of gluten and almost all dairy has changed my life, ( until I unknowingly eat something I shouldn’t). The accidental hit is concentrated and really quite scary to deal with for several days. Physically my joint pains, which were painful and as stiff as a board, the hives, stomach pain and more have totally disappeared. The only time I question my self diagnosis is when I’m in de-tox from an unexpected dose of gluten, basically when I’m in a bad place as nothing is ever right. Every other day I am truly thankful that I took the time to understand my body and its needs. I absolutely knew that there must be a reason why my mind and body were making me feel so bad. This really gives me hope that one day this will be out there for many others suffering unnecessarily to investigate, particularly my gorgeous son who displays ADHD/Autistic traits and won’t entertain changing his diet since my discovery. I know his life could be so different and I know he knows his life could be different too. He has taken it in and I hope once he is through his already difficult teenage years, he can start living a more settled, happy life .. much earlier than I did.

Hi I had the same discovery of non-celiac gluten sensitivity NCGS despite of suffering 8 years with intestine biopsy negative. I did test for NCGS at Cyrex Labs.which came positive. Now I am on free gluten diet since 2015. All symptoms disappeared but diarrhea still remain and still underweight . I also made stool test that find every thing normal except high yeast 4+ before 3 years but my doctor told me that is ?not any effect ,is that true? ?. Now I am starting to avoid sugar and starch like fruits table sugar , potatoes, and rice . MY QUESTION IS : Did your symptoms disappeared now and in your opinion expect my weight and diarrhea change? Thank you and others for reading my case.

I have had digestive problems for years now but very recently they had ten-folded, including chronic diahrrea, cramping, bloating, gas, etc, that was lasting over a 2 week period. I had been diagnosed in the past with IBS but never had a “flair up” that lasted this long. Knowing 3 people close to me who have been confirmed with CD I was educated enough to start suspecting gluten as the culprit and was encouraged by these people to look into it. Instead of immediately getting the blood test as originally advised (which I highly regret now) I began to eat a completely gluten free diet and started to do some research on my own. I found that I had other symptoms that may have pointed to a gluten intolerance or CD all along, such as mood changes and unexplainable joint pain all over the body. I spent about 2 1/2 weeks gluten free and began to start feeling like a human being again. But, as many people have experienced here I became increasingly chastised and looked upon almost as if I was either being a ridiculous brat/fad follower or was having a psychosomatic reaction to being gf. Many people said things like “you’re self diagnosing”, or “gluten-intolerance isn’t a real, I’ve looked it up”. I was completely taken aback by the ignorance. Technically, I was self diagnosing, however how can you argue the hard evidence of the symptoms? I would look at these people straight in the eye and say “I’d kill to eat a hoagie right now or a pastry from some of the best bakeries, but you’re right, I’m totally making this all up”. But there was still that part of me that still wanted a more diffinitive answer. After my 2 1/2 weeks of gf, I reintroduced Gluten to my diet. Initially no symptoms (I’m talking within the first few hours following the consumption). I was thrilled. Maybe it wasn’t gluten after all. But then, literally that very evening, the symptoms returned with a vengeance. Terrible gi pain and diahrrea. This is where I’m at currently, struggling to decide if I want to continue eating gluten with all these issues so I could get properly tested, or return to my gf diet so I can feel normal again! Any suggestions or personal experience would be greatly appreciated!

Shannon you do not need the approval of other people for choices you make in your life. It is up to you, of course, but I don’t think you need to put yourself through the suffering just for the sake of others. Who knows your body better than yourself. We all should listen to our bodies far more than we do. You feel so much better when you avoid gluten. That is all you need to know. I have had the blood test, which I now know is not very accurate. It told me that I am not sensitive to gluten but when I avoid it I no longer have the bloating and pain. You don’t owe anyone an explanation nor do you need to provide them with a test result. You are the only one responsible for your health and body and the only one who knows best about what is good for it and what is not.

My wife has serious celiac. I find your artical very insensitive. If you new just how serious celiac is you would not compare. Most of your reasons are arbitary, and are just based on speculation. If u are serious about helping people you would shed light on this entire condition not this petty comparision.

My son was diagnosed with Mixed Connective Tissue Disease at age 10. He is now 12 and we diagnosed him with gluten sensitivity a few months ago. Looking back he has had gut symptoms for ages but after two negative coeliac blood tests we were advised that a gluten free diet was not necessary. His symptoms became so bad in March this year (bloating, belching, pain, missing loads of school) that we gave the gluten free diet a go and after a few weeks his symptoms had totally resolved. He is now gluten free and dairy free and has very little refined sugar or processed food. He was on 5 different medications for MCTD but now he is only on 2 and we are gradually reducing these. I believe that gluten was the cause of this very serious autoimmune disease and from our own research I am hoping that we have found a way to control it to enable my son to lead a normal life, free from pain, joint swelling, skin changes, lung and heart disease. Modern conventional medicine does not seem to make the connection between gluten and autoimmunity and I would strongly welcome more research in this area.

No one is discounting the horrible nature celiac disease. What you and others fail to understand is that the celiac is a small (and the worst) manifestation of gluten intolerance. This article is trying to bring out the very real consequences of ignoring the MANY affects of gluten in the body. NCGS can lead to autoimmune disease as well as CD. It all happens because of intestinal permeability which happens under many circumstances. Dr Alessio Fasano is the one who said gluten is not digestible by ANY person –the so-called unaffected ones are also actually being affected and going through the damage and repair EVERY time they eat gluten. Our environmental factors (horrible food supply) are CAUSING more gluten intolerance –even in those who did NOT have the genetics! I am actually quite tired of celiacs, and the people who love them, not understanding that NCGS people are in the SAME DIRE situation. WE ARE IN THE SAME SITUATION.

Thanks for the distinction regarding types of sensitivity/testing available as well as the contribution to such conditions as ADHD and peripheral neuropathy. Most post and it’s a goldmine of a resource.

I’m 21 and I self diagnosed myself as being gluten sensitive for about 2 years now, and wow, am I glad I did!! Ever since I can remember I have been having stomach problems: constipation, DIARIA , indigestion. All of these intestinal problems made me go to the hospital several times, without a cure. My doc said I had IBS. She said I simply had to eat more fibre and more water… Well… I do already!

It was not untill I told my class friend two years ago what I had been experiencing, and she told me that she experiences the same thing! Her parents are doctors and put her on a Gluten free diet… And voila ! She had never felt better in her life.

I tried the same: I cut out bread, pasta, beer, pastries, cakes, etc. And IT WORKED! All my indigestion went away. My bowel movements are smooth and regular as well: no more straining and constipation!!!

I have found that I can tolerate whole wheat products such as whole wheat bread, but that’s about it. Travelling around Europe especially is hard as they eat a lot of baguettes and crepes, but laxatives in that case are my best friend. ( make sure not to use them regularly!)

I have gotten some negative comments or skeptical reactions from my diet change as people don’t believe that if I am not celiac , then my gluten intolerance is just a cry for attention or a try at the latest fad . But really it isn’t! Going Gluten free can be very costly and diminishing to a persons budget, especially a university student like me. Additionally, gluten free bread isn’t that great either .. So no, i am not making this up!

I hope you all can relate to my post and thanks for commenting your experiences here aswell

I self-diagnosed after having my doctor dismiss my GI symptoms as stress-related and prescribing tranquilizers. I was off gluten for 3 weeks, then started eating gluten again while I was travelling. What a mistake! Serious digestive problems but it did establish for me a pretty obvious GI/gluten connection. I have been slowly losing weight over the past year with no change in diet. Four years ago I lost 20 lbs for no reason and was exhausted all the time. It makes me wonder if gluten was the problem all along? (I have been hypothyroid for 20 years now, after Hashimoto’s thyroiditis and also have osteoporosis – my reading suggests I might be at higher risk of celiac disease.) As tests are sometimes inconclusive and unlikely my doc would accept a physical reason for these physical symptoms, I will just continue gluten free diet.

My symptoms was exactly same as yours, gone gf started to feel better soon after, but I still feel tired now and again, i have had blood test which dimissed CD, I then tried a self test year later in the presumption that CD is not fully blown, I wanted the test to be positive to ease my mind, however it was negative so reading the article above is my only answer to date NCGS.

I am sure you all feel the same way, but I just wanted to say how good it feels to know I am not crazy person and other people are having some of the exact same problems as me!! I am a 24 year old male who has been having stomach issues for a little over a year and tried a gluten free diet for a couple months and all my stomach problems went away… Of course this was after a half a dozen different doctors told me there was nothing wrong with me and to “sack up, your a man”.

However, sadly I am staying home tonight while my girlfriend is out with some of our best friends celebrating a 21st birthday party. The last couple months I have gradually slacked off more and more with being gluten free and last three days have been absolutely awful.

So seeing and reading all of your amazing comments and stories have given me hope again for being gluten free=) It just drives me BONKERS how people give us such a hard time about it?? We need to get on Oprah or The Ellen Show to fix this! Its sad knowing how many people out there are suffering from this with no way out. Especially all the young children… Its got to be fixed. I think there are a lot of big cooperate companies out there that would take a hit in business but it has to be done, right?

Also do any of you think that our condition has gotten worse due to the chemicals farmers put on the crops?

One last thing and sorry for rambling on, but there are 2 things that hurt my stomach the worst. And being a manly man in the heart of Kansas its hard to go without. Especially when all your friends give you hell. 1. Whiskey… The worst of the worst. I have loved whiskey way before it was legal for me to drink and now I cant take a sip without feeling like my stomach is going to POP for the next few days!! 2. Beer.. Not near as bad as the whiskey but it also tears me up pretty good.

These are the two hardest things that I have had to give up. It is hard hanging out with the fellas watching football catching up on life and being the only on drinking an Angry Orchard….hahahah

But again I just want to say thank you to everyone who has commented and told their story, they have helped me a lot.

Whiskey is made from corn most of the time. Most corn is genetilly modified and syptoms of a corn allergy/corn gluten allergy are very similar to other grain gluten allergies. You may have an allergy to corn as well. Corn is highly inflammatory and NOT a safe grain or substitute for wheat or other grains. Do a gogle search for corn allergy. While it is not on the top 10 lists for food allergies ot is on the top 15 (and required on labels on Canada)…and rising. Good luck!

That is really interesting. One of my first strange symptoms was my heart pounding when drinking whiskey and coke. Years later I was told I had a corn allergy but now that allergy resolved. I read a story about a woman who was really very ill and a ND told her she was sensitive to GMO corn and when she stopped eating corn, she recovered.

I can completely relate to what you’re going through! Although I feel for you on how hard this has been, I am still very happy to hear I am not the only one, and am not crazy! Interestingly enough I had this same question about whiskey just the other day. Going gf, I really missed my beers. I enjoy wine also, but was getting a little sick of that so I figured I’d try the hard stuff. Whiskey has always been my go to drink but I was worried, knowing that many of these liquors are produced from grains. As I researched it I didn’t get a definitive answer. But what most are saying is that typically when drinks like whiskey are distilled, it removes some of the gluten proteins. I say some because some are saying to stay away from the cheap stuff because there still may be some trace amounts of gluten. So I’ve been sticking to jack Daniels and have been feeling fine 🙂 Hope you can figure out something that works for you!

Do have over a 30% risk of cancer every time you ingest even the smallest ppm of gluten? Do you have to deal with your body attacking itself? Having a very good chances of having another AUTOIMMUNE disorder on top of what you already have? I didn’t think so. I’m honestly frustrated for many reasons with my condition and you’re the kind of person who doesn’t help anyone’s cause. I am going to be that disgusting person who comments ‘go eat shit and die’ because that’s what most people undiagnosed with CELIAC DISEASE, the real AUTOMMUNE disorder have to deal with.

Are you friggin serious here? Just the title of the article made me not want to read it. I used to think you had some sense, but this is BEYOND ridiculous!!! Do you REALLY understand what Celiac Disease is? Do you know how many people with Celiac are undiagnosed? So you think it’s more of an issue for NCGS folks to remained undiagnosed? Do you know what undiagnosed and non-treated Celiac can do to a person? I understand the concern is real for those with NCGS, but they also won’t die from other untreated diseases and medical issues that develop from undiagnosed CD. I just can’t even believe you wrote something so seemingly stupid.

I think there are two ways to take the statement about undiagnosed non-celiac sensitivity being more serious. In my perception it is not the health concerns of gluten sensitives that are more serious, it is the numbers of people that are undiagnosed, with their resulting myriad of health issues that lead to serious, chronic illness. Only a small population percentage are diagnosed with celiac (yes, a VERY serious illness) but what percentage of the population is acutally gluten sensitive? I am thinking that by now it may be 50% or more, providing huge profits for the drug companies.

Rhiannon, I really understand your anger but you are wrong. NCGS IS just as bad. ALL of us have the same elevated chances of getting cancer, diabetes, etc –all stemming from the autoimmune reaction to gluten. ALL of us should be avoiding every speck of gluten. 50% of people with CD do NOT present gut symptoms. It is horrible for ALL undiagnosed CD and NCGS. As someone with NCGS I am really with you but you must try to understand that we are actually all in the same situation. My heart goes out to you and all people sensitive to gluten. Personally, I hate that word “sensitive” because it belies the seriousness of the condition. No one should have ANY gluten if there is even the slightest “sensitivity” to it and don’t let anyone get away with saying that they are only “a little sensitive!”

Amen! to Amanda! I also have NCGS and have been slowly dying from the serious nutritional deficiencies, yeast overgrowth, high blood pressure, insulin resistance, etc. This is all in spite of a near perfect diet for 25yrs. Because I wasn’t running to the bathroom every 5 minutes everyone thought I was silly.

Kat this is how I understood the article too. It said it’s a bigger problem in that many more people are undiagnosed as NCGS. Like celiac disease is the tip of the iceberg and gluten intolerant and all of tjos undiagnosed is the big bit underneath. Hence a bigger problem.

Wow back at you!! Nope, I did not at all miss the point. I have an enormous amount of knowledge in this area and I feel he is completely off his rocker. I have CD and was diagnosed over 12 years ago. I read a lot, talk to a lot of people, host a support group, blog, write and read on social media, and all around just study a lot about this topic. I am fully immersed in it daily, and I know for certain that just as many people go undiagnosed for years and years and years with CD, and have even known doctors to not test for it specifically because they don’t feel the tests and 100%, which if you know anything about a diagnosis of CD, it isn’t so simple and clear cut as he seems to make it out to be. I could tell you dozens of stories of people who’ve had a difficult road leading to dx. It is FAR beyond my understanding of why he would present information in this manner, as it very far from truth. It’s unprofessional and inappropriate.

I have to say that ALL types of gluten sensitivity are way under-diagnosed. My daughter almost died as a baby, and I was at my wit’s end trying to find out what was causing the diarrhea. A gluten-free diet did bring her through, and I was finally, after going from doctor to doctor, assured that it was a classic case of CD. In the meantime, she has had the blood tests, and tested negative. Now she eats gluten and I suspect is in for a nasty surprise later on in her life. One alternative practitioner diagnosed her with a sensitivity to the phenol rutin, which is present in almost all grains. I really don’t know what to believe any more, and she will not listen to me. Both my mother and myself do much better on a gluten free diet, and have followed it for over 20 years with no ill effects.

“Worst of all, if this patient had not had this test, and had continued to eat wheat and gluten for the rest of her life, it’s likely that she would have been at much higher risk for the long list of serious conditions that are associated with gluten intolerance, such as multiple sclerosis, ataxia, diabetes, and even Amyotrophic Lateral Sclerosis (Lou Gehrig’s disease). (11, 12, 13, 14)”

This is a reply for Rhiannon July 8 and Taylor August 2. It is true that there are many undiagnosed celiac patients out there but at least the medical establishment believes that celiac disease is real. Non gut gluten intolerance is not even on their radar. My daughter has been suffering with neuropathic pain on her legs and arms described as numbing burning stabbing pain that is unaffected by over the counter pain meds or Tylenol 3 plus neuropathic itch on all limbs, throbbing pain in her head and petechia rash since late May. She can’t sleep from the pain and itch and is exhausted. She had to write her grade 11 exams in June with all this going on. Her summer has been spent mostly in bed sleeping because she is too exhausted to do anything. None of the doctors we saw (pediatrician, sports doctor, rheumatologist, neurologist, adult family doctor) had any clue what was going on and just kept telling us all her blood tests and motor function was normal. It wasn’t until I asked for copies that I noticed her subclinical but “normal” B12 levels and looked up her symptoms myself and found research papers discussing gluten intolerance causing neurological symptoms that I was able to diagnose her. We took her off gluten added in B vitamins and 3 weeks later she is starting to feel better. But guess what the same doctors don’t believe that this could possibly be the problem because her transglutaminase antibody test was negative. So yes I agree that there are probably many undiagnosed celiacs out there but there is at least the same number of folks dealing with undiagnosed symptoms that have nothing to do with the gut and no one seems to care.

Are you friggin serious? CD is a diagnosed medical condition. There maybe lots if people who aren’t diagnosed who have it but at least they can get a diagnosis. Your comment seems to indicate that you believe that anything other than a CD diagnosis is irrelevant. It may be to you but does that mean that undiagnosed NCGS patients are less worthy of compassionate, objective treatment? I’m an Australian who has had multiple tests that show I’m not a celiac. I feel better if I avoid all wheat and anything derived from wheat. My GP has no idea what it is I suffer from and neither do you. Don’t be so quick to judge others or an actual Doctor who is trying to figure it out. I thank the Lord that there are humans out there that aren’t as closed minded or easily offended as you.

Bahahaha, overreact much?!? You are reading something that just isn’t there. Never once did I insinuate that gluten intolerance or NCGS isn’t a thing. I KNOW it is. I get that. My point was about his claiming that it’s more dangerous to go undiagnosed, but if you actually read what I wrote you would have understood that. I am far from the person that judges others, especially when it comes to health, so calm down, get your panties out of a wad, and go get a new bowl of Wheaties because someone must have peed in yours.

Your insults don’t offend me. Rather they make me feel like I’m talking to someone who is only concerned with their own condition and who lacks the empathy, or even imagination, to perceive that other people are suffering from something that is not yet understood. The title of the article is “3 Reasons Gluten Intolerance May Be More Serious Than Celiac Disease”. I think you missed the word “may”. Just because a person can learn a lot on one particular issue does not mean that there is not a lot more to learn or be discovered. How do you know it’s not more serious? I agree that celiac disease sufferers deserve understanding and compassion. It seems you think this article takes that away from you. For me it helped me understand that there could be an explanation for my suffering. If you see me as hostile it’s because I believe a know it all attitude serves no purpose. I can’t believe that you haven’t had people look at you strangely when you told them what you can’t eat. We are all the victims of such bigotry. A point in the article you aren’t helping to dispel.

I find it funny that you’re so short-sighted that you can’t possibly imagine I’m anything but some selfish monster. Your perception of me based on one little paragraph is seriously amusing. Again, you are completely bringing in your our perspective on what you THINK I was replying to, and not what was meant by what I wrote, and that’s simply because you’re putting up your own defenses. If you want to actually have an intelligent conversation about what I think, I’m all for that, but I will not continue to talk to someone who feels it necessary to berate and brow-beat another for their opinions. That is all. Good day.

I agree with Mark. If you don’t want people to perceive you as self-centered you should really reread what you write. I don’t walk in your shoes and you don’t walk in mine. We can’t possibly know the heart and mind and physical body of anyone but our own.

I’m having similar issues with the majority of commenters! I have been sick for approximately 15 years now each year progressively getting worse, I’ve been tested for CD tests came back normal as did almost every other test that I’ve had! My GPs over the years have been supportive and luckily have not labeled me as a hypochondriac probably as I have lots of physical deformities that have developed in this time, I’ve developed club foot both my legs have twisted from the knee my fingers have all twisted and grown funny hard lumps at the joints! My skin is very scarred and at the wrong side of 30 I have more acne than a teenager! Fair to say that life hasn’t been kind, I’ve been diagnosed with HEDS and FM, in January I became intolerant to laundry detergent well I say became I think I became aware is more appropriate I’ve suffered from excess mucous for years and also many throat problems, I also suffer chronic gastrointestinal problems, I’m not what you would call big quite the opposite I wear a UK size 8-10 but my tummy swells to the size of a heavily pregnant woman regularly, sometimes painful other times not! I’m slowly but surely becoming allergic to life, new bed linen caused my whole body to go nuts every muscle in my body spasamed so severely I felt like I’d done some great physical feat! I’m currently waiting to see a immunologist but am wondering if anyone could point me in the right direction to get comprehensive allergy testing in the UK like the tests detailed above! Or if anyone suffering similar can give any survival hints! I’m sick sore and tired of being sick sore and tired ?

Sounds like undiagnosed CD or an extreme sinitivity to it. My friend had a lot of issues as well and it took 4 years to diagnose her. Also like the article said-milk. Both milk and gluten are inflammatory and can cause a lot of issues. :/

My daughter was diagnosis a Coeliac at the age of 21 after consuming way too much pastry when she broke up with her boyfriend. She went from a size 10 to a size 6 sunken eyes, dark rings and affected mood swings. Straight away my lovely doctor said Coeliac! Her bloods screen showed up with Coeliac and had opted for an endoscopy and colonoscopy. Her paternal uncle and grandmother both died of bowel cancer and my husband had a few polyps when he had his colonoscopy. She came back with graded Marshall 3 quite damaged villi. She insists that she find the culprit and hence my husband and I both had the gene test to see if either were carriers. He came back positive for HLA DQ2 alleles DQB1 *02 and HLADQ8 DQB1 *0302., I returned with HLA DQ2 DQA1*05 positive. There was no escape for her. She was not a sickly child but did suffer with bloating and tummy aches that got worse as she aged. She has been gluten free for 5 years now and fears eating out …anywhere in case she gets unintentional poisoning leaving her I’ll for days. My 86 year old mum has modified her cooking to suit, allowing her to eat at family dinners without fear. She has been so supportive as she too has seen the after effects gluten contiminaton can do first hand. Although my husband and I both eat some gluten we now avoid foods that irritate the gut. He has learnt that if it makes him feel sick then taking quickeze is not an option avoidance is the solution. We may not be classed as Coeliacs but it doesn’t take a rocket scientist to realise that foods containing gluten will affect us both but not to that extreme that my daughter suffers. I wished my brother in law had a good doctor who could have identified his constant ‘bad guts’ and realised he potentially could have been an undiagnosed Coeliac, he may still be with us today. You need to listen to your ‘gut’ it will let you know what it likes and dislikes. . Find a doctor that is willing to step outside the box and listen to what your saying. Keeping a food diary and track bodily functions and moods. You might be surprised what you find.

I started getting numerous symptoms to do with my digestion which after a lot of research I believed was celiac disease. My doctor ran several blood tests a couple which came back abnormal but celiac ones came back normal. Straight after my blood tests o adopted a gluten free diet whereby my symptoms went almost immediately. I decided to trial eating gluten again after not eating it for a month and low and behold my symptoms came flooding back but almost worse than before. I’ve now been gluten free for 3 months. Whenever I’ve eaten gluten food by mistake I immediately get extremely bloated have a headache and then I’m sick. Unfortunately I’ve just been sick after eating a gluten containing curry, which is how I found this page! In convinced this is an intolerance. People don’t take you seriously and almost turn their nose up when you ask the dreaded question ‘do you have anything gluten free’. Also the prices of gluten free products are absolutely ridiculous especially being a student myself!

I feel you, same here two tests and no positive result, looks like GF diet is the only way for now, shop around you will find some good deals, I am in uk i use tesco’s. If you need any shopping info let me know.

Some 15 years ago, in my 40’s I had the following conditions: osteoporosis and arthritis (on the list for knee replacement surgery), frequent migraines, chronic fatigue, light-headed and fainting at times, severe stomach cramping at times, high blood pressure, and what felt at the time like burnout/depression. My doctor only treated the symptoms. As a mental health therapist I took Thought Field Therapy training from the late Dr. Roger Callahan in California. The part of the approach taught us to identify food and environmental toxins in the body through muscle testing. Wheat was identified as my main toxin. It took me two years of continuing to eat wheat and continue to get worse until my personal use of a Heart Rate Variability monitor showed me in black and white that I could easily be a candidate for sudden heart attack. I could also see, through repeated testing, the effect that even the tiniest bit of wheat had on the health of my heart and nervous system. That is what convinced me. After I completely stopped eating wheat all of my afflictions gradually abated. 7 years ago I was able to get a full body bone scan which showed a complete absence of any bone issues. Long story short, as I continue to avoid wheat and related grains, I continue to feel much younger at 58 than I did in my 20’s.

Yes, Yes, and Yes. I have been gluten free for the past three years, and thought I was gluten free for 10 years before that but still consumed other grains including sprouted wheat and spelt. However, even my initial reduction in gluten had lasting impacts: chronic sinus infections ended, inflammation went down (my face actually changed shape becoming thinner and less puffy), and some chronic acne cleared up. After going completely gluten and grain free my mood swings and energy swings ended and my Ab (for Hashimotos) are gone! I have definitely been mocked socially for it and have even lost a friend who was adamant that gluten isn’t a problem (I suspect it might be for her as she deals with anxiety and depression, and ADD). My brother was diagnosed with dystonia some years ago, also experiences anxiety, depression, brain fog, fatigue…I think gluten a major player in his disease. What do you think? Have you had any patients have success going gluten free with dystonia? He is willing to try being gluten free but is only substituting with gluten-free products (breads, pastas, etc.) but its a step!

I see a nurse practitioner who specializes in thryoid and hormone issues, she recommended going off gluten for my thyriod, and surprise, the numbers on the test that indicate for Hashimoto’s disease are now back to the normal range! Sadly, I don’t ‘feel’ that different off gluten, but it’s good enough for me to have lost one of the five auto immune illnesses my body struggles with. (She now suggests I should let all grains go … but, it’s alot to ask, as I already don’t eat dairy, eggs, caffeine, coconut, or corn because leaving those out Does make me feel better!)

Dr Pimental says it’s not the gluten but the carbs. Even though I have the all-important celiac gene my celiac test came back negative but my intestinal biopsy came back positive for SIBO. My food allergies change like the wind according to my allergist except for the dairy which is always constant so sadly I can’t have kefir. However my past and current allergies include tomatoes, cashews (which is what most people substitute for dairy), corn, oats, beans. My daughter has Hashimoto’s and I just have 27 thyroid nodules. 30 years ago they thought I had Lupus but was diagnosed with a Lupus skin disorder which I got rid of thru diet and was told the rest of my illness was in my head. Although I was too sick to work, losing my career. I hope one day we get this thing figured out so my daughter doesn’t have to live the way I have had to.

I am also very gluten sensitive. I tested negative for celiac, but gave up gluten anyway. After about a year gluten free, I started reacting to dairy, as well as some other foods that don’t have gluten. I was extremely frustrated and the doctors were absolutely no help. Through much research, I discovered that I had leaky gut. That is why even though I felt better and some symptoms went away when I gave up gluten, It ended up getting worse. I switched to goat milk, kefir, cheese and yogurt with no problems. I am going to be doing a parasite cleanse, they can be the cause of leaky gut. I wasn’t aware that pretty much every single person has parasites. After I do the cleanse I will be addressing the gut issue. I have read story after story of people who were healed of autoimmune diseases, joint pain, rashes, brain fog, chronic fatigue and food allergies. It’s also better to eat an organic, non gmo diet. Look up natural ways to heal leaky gut. I strongly believe that is why I haven’t gotten better.

Julie, Listen to your nurse practitioner! And you might be interested in reading on on this post. Cheryl, So you may not actually have celiac d. (…yet) but it sounds like you are certainly gluten intolerant. You may not have villous atrophy (the usual symptom attributed to CD, but I am positive that your gut is leaky. This causes a myriad of food sensitivities because the body can’t handle the large food particles flowing through the loosened “tight junctions” into your bloodstream. There are lots of other alternatives to dairy (which you should treat as seriously as gluten.) Rice milk, coconut milk, almond and soy (although any of these could be a sensitivity at this point.) Rebecca, Great job! Keep reading –parasites also come through the leaky gut. GMOs are quite possibly a great factor in the increase in leaky gut. But also, gluten itself is too. 50% of gluten intolerant people are also intolerant of casein (dairy protein) and this includes kefir, goat, sheep, and even human milk. To heal the leaky gut: Go on elimination diet. Take digestive enzymes. For AT LEAST 4 weeks avoid nightshade veggies [tomatoes, peppers (including hot sauce, cayenne, paprika, etc.) potatoes and eggplant] mushrooms, all grains, legumes (including tofu, soy milk and soy sauce) all sugars (you are trying to even out the metabolism) including the very sweet fruits, coffee, nuts and seeds (including tahini which is made from sesame seeds and all oils derived from them)eggs, and all dairy products. I know, it sounds terrible, but this is a very empowering time when you are going to take control of your cravings and your addictions! Yes, eat organic. Yes, avoid GMOs. And, yes, this means you should only eat grass fed and organic meats and poultry. Eat smaller fish that have less of a problem of heavy metals. Eat fermented foods if you can such as sauerkraut, kimchi and kombucha tea. Unsweetened coconut yogurt INSTEAD of regular yogurt or kefir. These things have some live beneficial bacteria for your gut rehabilitation. Also good to take a good probiotic –the kind in the refrigerated section. When you are reintroducing each food be very mindful as to how you feel –not just in your digestive system but also and more importantly, your brain. 90% of our neurotransmitters are located in the gut! Did something cause brain fog, headaches, or even anxiety? Write everything down. Reintroduce each food alone, and not too close to a regular meal, and wait at least two days to reintroduce the next one. You can try them in the general order in which I wrote them in avoidance section. Never try gluten again and wait til really near the end to reintroduce anything dairy. If you have a dairy problem never eat it as you would do with gluten. I am not a doctor but my husband and I did this four years ago and it has changed everything. I want to encourage you! I am actually trying to finish writing a book all about the way to do this so that we stay the course and never cave in to former habits. It is difficult but you get to have your life back and may be able to completely reverse any autoimmune proclivity. Ack! I do have so much to say! I hope this helps.

Hi my name is Debra I have self diagnosed gluten intolerance, after getting blood work back that diagnosed me we pre diabetes high cholesterol and hypothyroidism…I chose not to take any meds and try and heal myself…after about a week of reading and reading..I started with eliminating gluten and within two days my brain fog was gone…I feel much better but I have a long way to go in my journey….I would love to hear more of your info

Hi Debra! I am glad to hear that you are feeling better. The important key is to heal your gut. If one suspects gluten, one should go through the elimination diet that I wrote above –not just avoid gluten. I got this from our doctors and one of the things that they said is that this diet cutting out all inflammatory foods for over a month or two not only “puts out the fire” but evens out the metabolism so that there are no more sugar spikes. This regulates your hormones –instead of stress hormones (cortisol) your body will healthily be back to creating the sex hormones. This is the purpose of our thyroid.

Hi Tambra, Thanks for reaching out! Maybe you can help me to have better writing habits –Ha Ha! Seriously, I would love to exchange information and, of course, make a friend around this subject! Are there other forums similar to this? Okay, I know I just showed major ignorance… people tell me to blog but I have not tried very hard to get into it. I did write something on WordPress (amandas720) … I really need help because I think that my book could be of help to a lot of people. Do we just keep conversing here, or do you have a better idea for you and me to continue. Sorry, I am not so great on any social media –I do have Instagram (to which I’ve not posted in a long time!) My best to you! Amanda Silver

Hi Tambra, Thanks for reaching out! Maybe you can help me to have better writing habits –Ha Ha! Seriously, I would love to exchange information and, of course, make a friend around this subject! Are there other forums similar to this? Okay, I know I just showed major ignorance… people tell me to blog but I have not tried very hard to get into it. I did write something on WordPress (amandas720) … I really need help because I think that my book could be of help to a lot of people. Do we just keep conversing here, or do you have a better idea for you and me to continue. Sorry, I am not so great on any social media –I do have Instagram (to which I’ve not posted in a long time!) In fact, I seem to be having trouble posting this reply! My best to you! Amanda Silver

To the general blog itself: I was also negative on the blood tests for Antibody Antigens to Gluten, but suspected strongly for years that bread and milk products were problems for me. Doing an elimination diet is hard, and so I kept putting it off until the summer I was in Germany. There, I was hosted by many guest families and I therefore ate whatever was offered and or whatever was inexpensive (mostly bread and cheese). After 3 months of this my chronic pain below my navel was so bad I feared cancer. When I got back to the us I scheduled a colonoscopy, but feared my gut was in such bad shape they might perforate me. Cancelled the colo and finally went the 5 weeks completely (or as best I knew) without gluten/wheat, rye, or barely. After about four to five weeks I noticed that the near constant pain in my abdomen had completely vanished, bloating and gas had disappeared almost right away too, and from then on for me it was clear that no matter if I could not prove it or say why, I did a whole lot better without gluten and or wheat. People who hear of my diet say really crazy things like: don’t you know most people aren’t truly celiac, you can probably tolerate rye-here try this, or oh you can cure that by eating wheat germ for so and so many weeks. I’m glad I don’t take these comments to heart or I’d be increasing my risk for cancer! I also used to get bad exzcematic rashes on my hands within two days of eating as little as two slices of normal pizza. Not to mention extreme joint pain and stiffness, and sometimes itchiness in/on/near my shins or inner thighs accompanied by swelling and the general feeling that my blood may be thicker than normal. I still get constipation and diahrrea from time to time, next thing to get rid of are milk products, and test for fructose and lactose intolerance, but I am pretty sure about casein. 🙁 Brain fogginess and emotional lability were much worse on gluten but are not completely gone off. I’ve had iron deficiency anemia many times, but taking it orally does not change anything. Currently i’ve got a low hematocrit, low mcv and mch, but within range low iron, so I have no idea. I am very active but do not notice progress in my performance no matter how correctly I train, though recently noticed increase in ability to breathe while running after a liver and Gallbladder cleanse which followed a colon cleanse (also against parasites) and now doing a kidney cleanse. I scheduled a biopsy of the small intenstine, but after reading about it, think i’m better off with the Cyrex Labs assay 3.

Hi Jessica, Sorry this reply so long after your question! The enzymes we take are in a product called GlutenFlam and the enzymes listed are: DPP IV Peptidase Blend (protease I, II, III, IV, V) Amylase I Amylase II Glucoamylase Lactase Alpha-galactosidase Papain Bromelain Lipase Cellulase There are other ingredients. I have seen other products available in natural food stores. Good idea to get the blood test instead of the biopsy!!

I think you can go online and order the test which you would then take to a lab where they can draw your blood for it. The more difficult part may be finding the doctor to read the test. You need a doctor of functional medicine. Find that person first and they may already have a protocol for the Cyrex test. I hope you are successful!

I have been GF for nine years. My sister was diagnosed by the gold standard as having Celiac Disease. I had blood tests done for only two of the antibodies and was told I do not have Celiac Disease.

However prior to all of this, I followed the Atkins diet for two years because I felt so much better when I was on it. Knowing this, I did a gluten challenge. After two weeks GF, I saw the elimination of hair loss, skin bumps on my arms, knee pain, back pain, bloating, headaches, etc.

I have not intentionally eaten gluten and will never intentionally eat it ever again. I have had doctors tell me that I don’t need to follow a GF diet because I don’t have Celiac Disease. I no longer see those doctors. I am learning about my body and don’t need anyone’s permission nor a prescription to eat GF. In fact, I am now grain and dairy free also and seeing even more health improvements.

I stopped eating gluten several years ago to help with migraine headaches. I no longer have headaches, but my gluten intolerance has gotten worse over the years. Now even a small amount accidentally ingested can make me violently ill. This includes throwing up (a lot), cold sweat, dizziness to the point of almost passing out and pain in my stomach. Then I’m exhausted and sleep for a few hours. I haven’t seen anyone else with these symptoms. I can’t be the only one can I?

I too eliminated wheat due to migraines, then all gluten to lower my thyroid antibodies. Now, since having a baby in October, I am suddenly having migraines again without any change in diet.

I hypothesize that I’m more sensitive to gluten now because I haven’t always purchased certified GF products that are commonly cross-contaminated. For the last five years this was enough, but now I must be more stringent.

Interestingly, I now cannot tolerate dairy, either. I have yet to trial organic vs. regular vs. goat/sheep. Now I wonder if I’m just more sensitive to everything since going through pregnancy and childbirth.

Dear Chris, I am so thrilled that you have written this wonderful article! I sense that you must be a good functional doctor and you read the research too! Everything you said is so important to have out there. How crazy is it that the normal course for detecting CD still requires the endoscopy (which could still turn up undamaged epithelial material) after they know that the patient is positive! Cyrex is the only good test –Our whole family was tested and we are all NCGI. We found out early 2012. I am so into helping others understand that my broader family and many friends are tired of hearing it. So I am writing a book. It is mainly for encouragement and the mindset but I am putting in all of our practical solutions to the many issues which arise in life.

I do want to ask you if you really think that the gluten challenge after 60 days of avoidance is safe. I had heard that returning to gluten, causing the cascading reaction of antibodies and killer memory T-cells could actually kick a new autoimmune disease into action. Please help me get it straight. Tom O’Bryan is one of my main sources of information –I got to hear him speak a couple of years before he gathered the Gluten Summit. So great to hear so many experts! Also, I have been reading Fasano’s Gluten Freedom and as he retold about some of the testing done to see if suspected CD and/or ADS would be mitigated by a gluten free diet and how about half of them (on GF diet) were not helped, I wondered if these would be patients who were also intolerant to casein. Even if they were avoiding gluten, if they still had any dairy the same gluten antibody reaction (and thus the same symptoms) would occur. What do you think? I would really love to hear from you if you see this post.

I had fatigue joint and bone pain skin rashes for three years bloating gas then using a walker a wheel chair I got so bad no dr could figure it out finally I noticed after eating certain foods the fatigue and bone pain would get extremely bad after about 30 minutes after eating. I told my dr and he just said well don’t eat that then. So I stopped eating it and all symptoms stopped. I felt like a brand new person . But in the last six months I have eaten gluten quit a bit and now I’m not eating it again but all the symptoms are returning… Swollen lump nodes through out body joint and bone pain fatigue. So my question is can you develop allergy a to other foods by continuing to eat gluten

I actually found this article trying to figure out why everyone bashes people who have a gluten sensitivity. I went GF when my 6 year old sister was diagnosed with Celiac. The whole house had to go Gluten Free because she is so sensitive and I lost 30 pounds in a year, my mind also cleared up. I traveled a bit and tried bread and had stomach cramps for days along with diarrhea. I tried half a piece of cake a couple months later and the same thing happened. Now I avoid Gluten, I eat out and just order food without Gluten and I’m fine, a few crumbs never bothered me enough that I notice. I do get bashed and teased endlessly and I hate it.

Very interesting. I’ve been dealing with this stuff since probably 1994, that I’ve noticed, but in reality probably all my life. (I just am turning 65) Before I read your article, some time ago, I found and printed out that article about FODMAPs that you mentioned, and it was helpful to me. But, it’s not the total answer. I’ve tried the “Paleo” diet (Eades), and it cleared up a lot of things that were bothering me, I did notice a lot of things “normalized” or improved greatly, but there were other problems, mostly with the Omega 6 EFA – Arachadonic Acid Cascade occurrence. That was a real problem. I’ve tried the Low-Carb, Gluten Free diet, had to buy the book, and the little baking pan, which was not cheap; only to find out that I’m sensitive to the high Oxalic Acid content of the almond flour (or meal; and other foods also), which is the basis of the diet. I used to be addicted to chocolate, and found that I no longer even tolerate it because of the that (it appears). I found that when I stopped eating foods high in Oxalic Acid that I once considered healthy, that, that helped a lot. (Red Swiss Chard, who would think that would be a culprit?) I’ve been through all the Celiac Panel testing (except for the invasive endoscopy procedure) and full allergy testing, and it all came out negative. I was left with no answers, but still lots of symptoms that were plaguing me, and less money as well.

My family liked to travel, so we would travel between 2006-2013 to different places. Ever since I was a kid, when we traveled places, even just to visit relatives; by the end of a week I’d be sick. It got worse in the last 7 years. Meanwhile, during the time I’ve been dealing with all this, my husband (and friends) got sick of hearing about it, my mother-in-law would just shake her head at me, and I got tired of being treated like a hypochondriac, and hearing “What can you eat?” at restaurants, so I would just shut up and eat whatever they were eating, and a week later, end up sick. I’m tired of it all. The doctor’s can’t do anything, so I don’t want to waste my time or money trying to figure it out anymore. But, I’m ok if I starve myself to death. Whoopee. So, here I am.

Sounds like you have SIBO- small intestinal bacterial overgrowth. I would ask your doctor for the breath test, it’s simple and will answer a lot of questions. The diet for it is restrictive, more so than the celiac diet but it does help! You could try it by looking up FODMAP diet and reading about it and what it is that triggers you. You may be sensitive to all FODMAPs or just one category. Good luck!

I have had issues with my stomach for about ten years. But it was so subtle that I thought that it was just my ‘normal’ stomach. Well the diarrhea lasting for hours became more frequent and the bloating and feeling like I could pass out at any moment during these episodes, I do get migraines and I am more tired and I forget a lot of things all the time. My husband was concerned that I could have some serious health issues. I’m only 32 and this past Dec. I had a terrible episode that was also accompanied by the stomach flu, I couldn’t eat for a week without having some extreme pain. So I choose to eat crackers and water which caused some serious issues with bloating. I finally went to see a gi doc after a trip to the er and he said i tested positive for celiac and crohns disease, but people who test positive for those usually have a false positive. But I had to have and endoscopy and a colonoscopy because I have a strong family history of celiac disease, my little sister has had it since birth, my dad, his sister and my cousin. All from my dads side of the family. Well there was nothing wrong with my stomach or intestines and my biopsies came back all negative! And my gi doc was rudely sure that this is just my body and it’s normal way of digestion!?!? He now wants to run a test of overgrowth of a bacteria and see if that’s causing the problem. After eating pasta without sauce, which I thought was irritating my stomach, I was so bloated and the pain started, I started a gluten free diet and my stomach feels so much different. I don’t have a ‘heavy’ feeling in my stomach anymore, no more painful bloating or gas too! Feel kind of sad that a gi doc doesn’t want to really explore this issue and because of this I am going to have to get a second opinion.

I was diagnosed as a latent celiac (after blood work of 204 when range was suppose to be 20 or less) by my gastroenterologist back in 2008 and was told not to go gluten free because there was no reported damage to my vili – worse advice ever. In 2009 got terribly sick, weight just fell off me and my doctor said “why do you think you’re losing weight” and raised the ‘C’ word and prescribed me asthma inhailers because having trouble breathing – I said thanks but no thanks, my lungs are fine and got them tested and they were. I decided to go gluten free because I had nothing to loose – nothing else was working. It took me 6 months before I started to feel better and many many times I questioned not just my direction I was going in, but whether I would ever feel like me again. I have oral lichen plants as well which is another auto immune disease but in 2012 I started to let a little bit of gluten creep back in after holidaying overseas and because my gut doesn’t react like some peoples do, I thought can’t be doing much damage but I was – just can’t see it. In 2015 got a frozen shoulder and developed carpel tunnel and peripheral neuropathy in my hands and feet and slowly gluten has been poisoning my body – terrible headaches as well. A few weeks ago I decided to go completely g/f again, cut out most sugar that I can and think it’s improved things a lot already. I am hoping the neuropathy will keep improving as still not back to how I was. I am wondering if I cut out dairy will that make a difference too but because I don’t react to it once again it’s that doubt that lingers – if you don’t get a reaction you think oh it must be okay but is it? Giving up dairy would be. very hard not just physically but emotionally like grieving for another loss. Has anyone had anything similar to my journey I’d love to hear about it if you have. Keep strong my G/F friends 🙂

Yes I have RA after 4 years I started getting shooting pain in my feet. I recently read a book Medical Medium, he sez autoimmune is actually Epstein Barr virus and wheat dairy eggs corn and soy feed the virus. I did his 28 liver cleanse and the shooting and burning pain and hot flashes and horrible night sweats stopped in first 10 days. If you have frozen shoulder that’s caused by shingles virus. Look up book. ✌?️

I have been living and eating a gluten-free life for three-plus years now. I’ve been tested twice and come up negative buy Local doctors; but I am well aware of the differences between when I am eating gluten, and when I am not eating gluten. How do I get in touch with a doctor that will do serious Labs testing?

You could try reaching out to Progressive Medical Center in Atlanta, GA. They took food sensitivities very seriously, and proposed a sensible approach to determining a healthy lifestyle/food program accompanied by natural remedies to balance symptoms during the elimination period.

Rebecca, Find a functional doctor. Get the test done by Cyrex Labs –Array 3 tells you all your sensitivities but there are several arrays one of which detects how leaky the gut is. It is great that you have been avoiding gluten! However, if you have been doing this long enough it might not come up on the test. (That happened with my son but we got Array 3 anyway because we felt that there was something else –which turned out to be egg!) I am NOT telling you to eat gluten to see if you react. Just find a functional doctor. Sometimes they are called holistic.

I will “try” to keep this short.About two years ago I was so scared because I felt like I was slowly dying. I had been progressively getting worse for about 4 years previous. I couldn’t lift my right arm up, it didn’t hurt, it just wouldn’t go up past my shoulder. I also had these horrible muscle cramps in my toes that would completely twist my toes all around, I also had nodular acne and wanted to know what was happening. I was told by the dermatologist that this happens to some women in their late 30’s, and pumped me full of medications. They did not work, I then ended up seeing a neurologist, they did a MRI and Lumbar puncture and they confirmed MS. I was to start MS medication but for some reason for almost a month the order could never get filled correctly so I did not get it, I decided to try what some people stated on web searches had done. No gluten, low sugar, low dairy. I didn’t expect much other than for it to maybe make me feel a little better while I waited for the whole medication thing to get sorted out. The first week was horrible, but after that everything changed and I mean everything. I was able to completely use my arm in about two weeks, the constant fatigue continued to improve with time, the upset stomach ended, within about one and half to two months all symptoms gone. I switched MS doctors and never started medication, my MRI’s have been unchanged in the past two years, she said at this time she respects my wishes to not start medication and will monitor me. I don’t know if it was gluten, sugar or just coincidence( I doubt that last part) but all my doctors admit that if it weren’t for the MRI’s and Lumbar puncture results they wouldn’t think I had MS(the MRI has two small very light areas, my doctor said it looks beyond well for someone with MS, she wouldn’t expect the symptoms I was having), however when I mention could it be the gluten , or sugar they all act like I am crazy. I am not in denial about MS, I just want to know what is really happening. Two years mysteriously symptom free almost immediately after changing my diet causes one to question things. Well that is my story……I hope some day someone will be able to tell me what is really going on. If that is MS fine, if it is really basically getting poisoned from gluten, or sugar because I can’t handle it then that would be nice to know. I had some gluten free candy around Easter(very little) and it was about a week of hell. Who knows.

My 12 year old son suffers from constant exhaustion, has had a serious bout of pneumonia, constipation, gas, diarrhea, athletes foot, and is sick a lot of the time. 🙁 We had him tested for Celiacs but it came back negative. I am gluten free and have never felt better. He thinks what he experiences is normal and being gluten free is too hard.

Stephanie, I think that you know the answer. No 12-year-old wants to be different and they all want to eat pizza. My two kids had to stop eating gluten four years ago at about 11 and 9. Yes, it was difficult but now they know they do not want to go back to feeling yucky. Get the Cyrex test Chris is talking about because you will know for sure (and also find out if there are any other food sensitivities.) Gluten intolerance compromises the immune system and that is why he is so often sick. I implore you to put your foot down because it only gets worse. Autoimmune diseases. I am writing a book right now that has some great ideas for the revival of families through the right attitude for sticking to the gluten free diet. Our children are my heroes!

My son, was diagnosed at 2 1/2 with Failure to Thrive. We were not told about the Gluten aspect! He was extremely shy, and small for his age and cried easily. At 10 he started to struggle with concentration with school. At 14 phobias and irrational fears. At 16, he was having major allergies to bees, cucumbers etc. . . bloody noses, concentration issues and unwarranted anger. I finally decided to have both of us tested for Celiac. I have a Celiac gene and a GS gene. The stool test showed sever damage. He has two GS gene’s, the Enterolab described, as worse than Celiac, which was all too true, it was affecting his mind. His stool test showed the upper end of moderate damage. We consider him Celiac because his symptoms were so much more acute. Three years later, after being Gluten free, DF, and soy free, we are on the mend. Any accidental ingestion of wheat causes us both extreme reaction. We will be gluten free for life.

sadly i have to agree with all the negative comments both my son and i have encountered from all family members who arent affected. this disease is really hard to handle for this reason mainly. add to that, never being able to eat out and having to make all your own meals three times a day/finding fresh produce every 2-3 days and you get tired. Its too bad that ppl who arent experiencing these symptoms wont try giving up sugar and wheat (and just plainly believe) just to see how it makes them feel better. Carry on Fellow Soldiers! 🙂

Thank you for your post and the post of all fellow sufferers. It is sometimes very lonely when you are the only one in your family or circle of friends who has to deal with food issues. Food is such a part of our lives that getting through any special occasion can be a challenge. I can’t count the times I have heard “Try just a taste” and have been told that gluten issues are a fad. Two days ago I decided to go ahead and eat “just a taste” of something I should not have. I am still experiencing the result. I am in pain AND angry at myself. Thank you for this forum – for good advice and for the knowledge that I am not alone in this.

No, you are not alone! Any many of those family members are probably also gluten intolerant. We cannot tell others what to do but we must remain strong and never have “just a taste.” I really understand how tiring it is but I want to encourage you and others to carry on. There is so much more to life that eating, but if eating is important (and it is) make it the very best that you can. Be adventurous. I don’t know if you cook but you can create great GF DF food! Have you ever tried sweet potato starch noodles? Get the thin ones from an Asian market. Garlic, ginger, red bell peppers and green onions are not usually allergens… and if the folowing don’t bother you, try some sesame oil and tamari (soy) –if they do, a little Chinese cooking wine is good to throw in with the veggies while they are cooking. I get carried away when I think about food!

I am an ICU nurse. I have a general skepticism of fad diets and “vitamin” supplementation. I have been taught to believe that for optimum health you should eat your five of vegetables and eat less calories than you use.

Approximately 5 years ago I developed sudden onset chronic hives with occasional angioedema and mouth/tongue swelling. I went to my doctor who sent me to an allergist who told me I was near 40, harmonal, and normal. He said I had sudden onset allergies to outdoor things and no reason to consider a food allergy. He gave me new medicines and sent me home.

After 5 years of increasingly worse symptoms, increasing episodes of hives, multiple medication trials, additional inhalers and the occasional epi pen for airway obstruction, I ended up with an anaphylactic reaction that took massive amounts of inhaled epinephrine and IV steroids to stop. All I could imagine was that I would end up on a ventilator like one of my patients.

I picked a new allergist and did an autoimmune diet. After 5 weeks I did an allergy skin prick test as well as a huge series of blood tests. He discovered that I have Hashimoto’s disease with euthyroid function, as well as an IgE positive for both wheat and eggs.

I am still gluten, dairy and egg free and after 8 weeks and have had an absolutely amazing recovery. I have been hive free for the first time in 5 years. (Except for the one day I tried to reintroduce eggs to my diet.) I have had an amazing reduction in hand and ankle inflammation (I have terrible arthritis which “can’t possibly be rheumatoid” even though I have never had an RF panel but my Sed rate is at the top of high normal. ) I feel better, I look better, (my husband comments that my eyes look brighter and my face isn’t as puffy all the time), and although I have only lost about 12 pounds in 8 weeks, I can tell a huge difference in my energy levels, my mood, and my ability to deal with intense stress, which is a daily part of my job.

My regular doctor thinks It is “a bit extreme” to eliminate eggs and wheat since the IgE showed only a “mild” allergy and that my Hashimoto’s should be left untreated until my thyroid starts to show low TSH levels. She thinks my autoimmune diet is unrelated to my symptom relief!!! How can a doctor discourage a better diet as extreme while encouraging a patient to completely ignore a known autoimmune disorder that is proven over and over by respected scientific research to be linked to other autoimmune disorders??

This experience has really opened my eyes to how absolutely closed minded most doctors are to the science of eating better to improve your health. It is NOT just about calorie consumption, but about the QUALITY of the calories we consume as well as how our individual bodies REACT to these calories! Instead of listening to our bodies we simple ignore the symptoms or hide them completely with medications. General Practitioners need to open their eyes and treat the whole patient starting with the cornerstone of nutrition.

That is quite a story Marti. My 19 year old daughter has Hashimoto’s and I had her allergy tested and I was shocked that she had no allergies at all , yet some foods make her heart pound so hard you can see her neck moving in and out.

Cheryl, a few thoughts: Toxins and auto-immune reactants have effects on the body also when ingested. These will show symptoms similar to allergic reactions. Also, people who are overmethylated have low allergy levels, but great sensitivity to foods and chemicals. For a list of the other features of overmethylation go to the bottom of this page:https://liveto110.com/93-overmethylation-undermethylation-dr-albert-mensah/ I’m not saying gluten isn’t involved, but just that there can be other causes of severe reactions to foods. Has your daughter been tested for toxic metals (hair analysis, etc.)?

Cheryl, I also have Hashimoto’s and have known for a long time that certain foods make my heart pound. Only recently I connected this reaction with foods containing tyramine. which is a natural amine found in all foods but much higher in foods that are aged, fermented, pickled ( salami, cheese, sauerkraut, smoked salmon, anchovy paste, etc… ), in foods that have been stored for a long time ( nuts, dried fruits…) and also in overripe fruits like bananas, oranges and avocados.

I am sorry to hear that your doctors don’t take you seriously. There is a great Facebook support group for Hashimoto’s and gut issues. It’s called; FTPO-thyroid topics (for thyroid patients only) google it and make sure to put in Facebook in your search, there are many different issues they deal with and you have to join each group to post by hitting the “join” button. For example; there is one called FTPO- thyroid issues for patients without thyroids, or Hashimoto’s, or patients with adrenal issues. They ask you to do this so that they can be sure you are a real person and not a multi-level pyramid sales hack. The administrators of the group’s are great and can even look at your labs and help you understand them. Check them out, they saved my life after I was told my TSH was fine but I wasn’t converting T4 into T3, the only active form of Thyroid hormone. Good luck!

Will make this as short as possible. I am sensitive to gluten but no celiac disease I’m aware of. I had a thick green vaginal discharge for 6 years that had been tested over and over and over, treated with creams, antibiotics,etc. Doctors stumped, had no idea what it was. I also would eat gluten and immediately get a uti. Quite by accident I decided to go on Adkins diet because I remembered how good I had felt 15 years prior when I was on it. A few days into the diet and the discharge stopped. My frequent UTIs also stopped. I went to the doctor explaining that gluten was causing my frequent bladder infections (various doctors and nurse practitioners thought I was crazy) and I needed to be tested to see if I was allergic to gluten. The physician seemed almost angry even discussing anything about gluten. He did a blood test and said I did not have any allergies or sensitivities, which I guess was supposed to pacify/ satisfy me into believing him. I have found out through research that the test he performed was (of no surprise) totally inaccurate and rarely produces any results of allergies. So basically, my gluten sensitivity does not effect my gut, but it does irritate my urethra and bladder. And… I also notice that eating gluten causes me to have carpel tunnel type pain. I had to wear wrist brace a lot but now I never need it. That’s just where my inflammatory response effects me I guess…..

I have the same issue with chronic UTIs. When I moved to college a couple years ago, I lived with UTIs constantly and then before spring break my work out buddy wanted to give up gluten for a couple weeks. During those weeks I didn’t have any issues with my UTIs. However if I accidentally ate gluten today, I would wake up to a UTI. I do have a constant odor to my urine and a cloudiness. It seems that it won’t go away unless I take a prescribed antibiotic that I have on hand. I went to a urologist about a year and a half ago and he performed a cystoscopy and found nothing wrong, but I haven’t since contacted him about my suspicions of being sensitive or intolerant to gluten. It’s nice to know other people have been through this as well; one time I was getting a physical and there was some medical student in training helping give my physical who fought with me about how I was wrong and that gluten should have no affects on the urinary tract. I am trying to find an allergy/immunology specialist so that I can see if they can diagnose me so it’s “official”. I’m hoping I can find the right doctor that will believe me!

Hi, I have been suffering silently for some time now with IBS, I finally went to my GP around Christmas time as I was constantly going to the toilet and feeling generally tired, achy and irritable. She recommended FODMAP although I went through my diet with her and turned out I was eating bread, pasta etc almost every meal! She still said to do FODMAP. After 2 weeks of following this religiously I felt 100% better, another week later, we introduced milk and I felt a bit ill, but stuck with it assuming it was because I hadn’t had it and now it is fine. All other groups have been introduced and I have been perfectly well with them. I had a hot cross bun last night as my test for gluten, felt a bit crampy but that was all so thought it to be like the milk ad I should persevere but then today I ended up in bed for 2 hours with headache, awful cramps in my back and abdomen, aching all over like I was getting the flu and went to bed in tears! Woke up and felt a bit better, still have a headache that tablets won’t cure. I am not sure if the symptoms for NCGS can be so bad the next day but not the same day? My GP still says it isn’t NCGS even though everything else on FODMAP is now okay. She says I need to still eat something with gluten tomorrow and Tuesday and make a note of my symptoms but now I am scared to, anyone else had a similar experience to this? Thanks

Great article! Advice needed – – I have a 15 yo with peanut allergy and tons of seasonal and food allergies. Hoping to get her off her monthly injections. Headed to naturopath in a few weeks, stopping in at the GP tomorrow to ask for updated CBC, Thyroid antibodies, homocysteine blood test, Cyrex Array 3, Dunwoody labs Advance IBA – anything else that I should think about or ask for?

There’s no doubt food is the source of her issues, but I need to narrow down and *prove* it to her – her diet is drastically better than even a year ago, but her go to is always sugar and gluten… it’s a huge stressor in our relationship – I need help!!

I am a 54 year old female who developed sensory neuropathy in my feet about 5 years ago and RLS 8 years ago. After the neuropathy developed, I had DNA testing for alpha gliadin which turned out positive in most categories of potential manifestations(?) I’ve read a lot about the connections between these 2 maladies and their possible tie to NCGS…but like you’ve said, it’s hard to explain to people WHY I feel like I should avoid gluten…and it’s hard for me to actually DO IT when I’m NOT having diarrhea every time I eat gluten. I’m doing my best, usually, nothing has changed but nothing has gotten worse either. It’s frustrating!

I have recently tried gluten free or more specifically wheat free back in Sept of 2015. I got very ill from withdraw at about day 4 but on day 6 felt fantastic with no more joint pain and slept great. I then started letting small amounts of wheat in diet to see how I can handle it. Then recently after watching gut summit I realized my blood sugar has been spiking and dropping so I got a glucose meter and sure enough I was not balanced. So I went off all grains for a few weeks and just the other day Jan-2016 I had one piece of bread with meal for supper. I woke a couple hours later with sinus congestion, nausea, heart palpitations, shakiness with joint pain. I am done with wheat for good.

I found out by my brother obsessively making easy/lazy food to where it had to go on bread/buns, my period would come on sooner than it was supposed to, my face would break-out, I’d be tired and sleep long hours, and my teeth would go discolored, my stomach would bloat,… I think protein was leeching into my blood, as well as I wasn’t getting any nutrients to help my teeth, as they were soon breaking apart once again.

I have a rather long story, but in short: my brother kept and still keeps finding ‘scapegoats, thinking that all dentists are right about teeth being glass and that because a white cloth is stained by tea/coffee/wine that teeth are just like that white cloth, when they are not, nor should they break apart when you’re barely chewing something.

I do think though that I can’t have whole grains, Every time I eat brown rice, I have almost the same problem with my teeth turning brown/discoloring. I think even if I eat whole grain quinoa, it’s also problematic. So I’m thinking I can’t have whole-grains, but I also staying away from wheat, which my family still doesn’t understand how to avoid cross-contamination.

I still do sleep long hours, but only if I’ve not gotten enough protein or was working out a lot. I also have a problem with tomatoes, as they are nightshades and cause my skin to break-out in dryness, or too much yeast. I do not think human bodies were meant to eat grains, unless they are sprouted, but these industrial companies and the FDA don’t care about human-health, all they care about is lining their pockets with money and to heck if not sprouting the grains wreak havoc on human bodies.

My teeth started breaking when I was 19. I didn’t find out for another 30 years that I was gluten sensitive, malabsorbent and that I don’t metholate. I suggest you ask your doctor to check your vitamin D levels, get off the gluten and find out if you have the metholation gene or not. It can save your teeth and your health.

I suspect I’m celiac, but haven’t eaten gluten for years, which my brains thank me for. I cut dairy and coffee out completely as well, but would love to learn more about what’s going on inside with Cyrex 3/4, SIBO (I think I’m a methyl gal), and hormone testing because I’m not sure what is my chicken and what is my egg – all in due time!

I have NCGS and suffered for 10+ years with Fibromyalgia and could not determine the reason. I finally read a book by JJ Virgin and it helped me see all the little pieces of the puzzle about food. I did an elimination diet and added each thing in individually like she recommended. I found that gluten and eggs gave me severe joint pain and after giving them up my Fibromyalgia disappeared. That was 4 years ago and I have never looked back. Changed my life!

Hi. I am suffering fibromyalgia too and i started gluten free diet for 5 months. I didn’t eat anything with gluten even mayonnaise. I don’t eat night shade vegetables. But nothing happen to me. The pain is killing me. All the time I have pain in my neck shoulders, and backache…..none of pain killers help me. I can’t sleep well and I’m so sad

Gluten could be slipping through the cracks. It’s not easy eliminating every bit as it takes time to learn what acronyms on packaging are gluten and which are not. Also, cow dairy must be eliminated as well as, according to Dr. Kenneth Fine, about half the people who are gluten-intolerant are also dairy- intolerant. If I eat dairy, I get those wide-spread weird pains the next day on top of swelling in my knuckles where I can’t make a fist. I can eat sheep or goat yogurt and cheese without a problem, but I eat very little of these.

I’ve got something going on. I don’t know if I would show up with celiac on the usual tests and I don’t really want to take them because some of them require eating gluten and I don’t know what my doctor would pick. Paying for my own Cyrex testing is kind of out of the question financially. Since there’s no dietary requirement for wheat, I just don’t eat it. I’ve had a few minor slipups (I know, they’re not *exactly* minor, but we’re talking traces) but nothing deliberate.

The big reason I’ve been able to ditch wheat is because I get almost no migraines off it. I went off wheat experimentally at the beginning of 2012 because I had a weight-loss stall so I was trying to pinpoint what might be causing the plateau. Went on a self-imposed elimination diet starting at nearly all meat and then reintroducing other things. I went through January and February with no wheat and then had a plate of noodles in March. Got sleepy within half an hour and still had to drive home. Was convinced. Also found it easy to ferret out what little trace gluten I was still getting because if I went to my favorite Mongolian Grill restaurant I would feel like a slug half an hour after *that*. I don’t go there anymore because I don’t feel like being limited to lemon sauce and there’s always the risk of cross-contamination.

And in the midst of all this I came to realize that my headaches had largely gone away. Understand that this began in early 2012, I was focused solely on weight loss, and I had had a pretty noticeable uptick in migraine incidence and severity in the latter half of 2011. No idea why. Maybe my body was on its last legs putting up with my wheat intake, which had always been pretty high–I guess I was addicted to the stuff, which I’ve since heard can happen. I was even using those stupid Dreamfields noodles on low-carb! But I was getting headaches much more often, and was getting visual prodrome which I had not ever done previously except one time when I was under a lot of stress. So this was all scaring me. So having it suddenly disappear was amazing to me.

I keep telling people this, and I’ve had my own friends make fun of the gluten-free movement KNOWING what my experiences have been. Or else they weren’t really paying attention and I guess I know now who my friends are. I suppose my words mostly fall on deaf ears. But I tell myself maybe someone’s lurking and learned something. Migraine is a risk factor for stroke and I’ve lost three of my four grandparents to cerebrovascular events. This isn’t just a matter of discomfort.

(That said, not everyone can cut back their migraines going gluten-free. It works for some people, but not for others. Worth a shot, though, if someone out there hasn’t tried it yet. What have you got to lose?)

I went gluten-free for convenience: my husband was pretty sure he was gluten-sensitive, and I didn’t want to tempt him with all the gluten-laden items I love in the house, and I didn’t want to start eating separate meals. It was a fun challenge to find a bunch of new recipes that are gluten free, plus, I must admit, I thought I might lose a bit of weight.

My husband and I had two friends that were sensitive to gluten, fairly early on, that really opened our eyes to the condition. The first (not diagnosed as gluten intolerant: just allergic) gave up gluten in 1997. Along with being more healthy in general, his personality changed from being slightly flighty to the most philosophical and thoughtful man. He died in 2016 of Lou Gehrig’s disease. The second friend we knew from our college days and would describe him as outgoing and adventuresome and on his own schedule. I.E. always late, undependable. In 1997, he also found out he was “allergic” to gluten. I don’t honestly know if he gave it up. 10 years ago, now a family man, he was diagnosed with ADHD, which he began treating and is now a bit more dependable! Both men mentioned a fog being lifted.

In addition, my husbands’ sister has had migraines for 50 years. She has tried everything including prescription medication. Nothing helped until she gave up gluten.

My husband is a unique man – very health conscious. He could “feel” his immune system “weaken” when he ate gluten. He hates being sick, so he just stopped eating it. Results: He hasn’t been sick (colds ALWAYS turn into sinus infections for him) for 5 years. Me: I’m not as sensitive, but I DO feel better, I’m less bloated and my adolescent skin has FINALLY cleared up.

I am dumb-founded how socially unacceptable it is to be gluten-free. A lot of it comes from the most outwardly un-healthy, but I also get it from family members in the restaurant business!!! They compare it to being a vegetarian, which is, well, I guess it is just naïve. But it doesn’t seem to help to lecture.

I gave up gluten some 18 months ago, although I admit every now and then I do cave into 1-2 small local bakery true butter cookies. Since then, I’ve been migrating my family to organic produce, more herbs and spices, more plant-based food, and a tremendous reduction in processed foods.

My symptoms were NCGS, I stumbled upon the book Wheat Belly, recognized that I could be a poster child for wheat belly, and it changed my life. I went through almost a week’s worth of withdrawal from wheat – I never, ever thought I could be addicted to wheat, it never crossed my mind. I was the queen of whole grain, whole wheat flour, added wheat germ to meatball recipes instead of just plain old breadcrumbs, wheat germ on yogurt, wheat flour, whole wheat pancakes and waffles…..you name it. I thought I was being so health conscious for myself and my family of 7, and all the while I was poisoning myself and family – some are more gluten intolerant than others.

I haven’t had a sinus infection in 18 months – I used to get a sinus infection 4 times per year, almost like clockwork. Bronchitis would set in at least once a year from the chronic sinus issues. I had constant sinus headaches, I don’t know if some of them classified as migraines, but I would have to lay down in a dark room to find relief. ear aches every night while I slept that woke me up. I could feel the fluid move from one ear to the other when I rolled over to relieve the intense ear aches EVERY SINGLE NIGHT. Every conventional doctor I went to was more than willing to write a prescription, but no one looked to the source of the problem. I am so grateful that I stumbled upon Wheat Belly, and to Dr. Davis.

Another symptom for me was chronic joint pain. I was terrified that I had some sort of early onset arthritis. It hurt to get up from sitting in a chair. It hurt to bend down and pick up something I dropped.

Mind you, I never struggled with my weight, and then in the last 8-10 years or so, BAM, I gained more and more weight, no matter what I did. I was always thin as a child, teenager, and well into my 30’s. So….after going off gluten, I lost 50 lbs. in 8 months. How unbelievable is that?

Wheat/gluten, for me, is evil and toxic. Cyrex Array 3 would have been interesting back, but now I’m not sure it would read anything for me now without ingesting a lot of gluten/wheat, and I’m not willing to do that just to have a test validate what I already know.

That said, one of my daughters had serious eczema issues for years – she is currently in college. She is also gluten free, but occasionally flares up, either by accidental contamination or there may be some other trigger. Soy is an interesting possibility – soy floods the American food market – it’s everywhere. The point is, my daughter is set to do the Cyrex Array 10 next week which test for many types of food intolerances.

Cyrex has a very informative website, and if you call their toll-free telephone number, they are extremely helpful and will guide you through the process.

Dana, I am so happy for you discovering the wheat cause of your migraines! I want to encourage you on your gluten free diet. Most of these people who try to dissuade you from your proper diet have no idea what they’re talking about. The reason you cannot go to Mongolian Grill is that EVERYTHING is contaminated with soy sauce (which contains wheat.) I suggest that you NEVER take any test that requires you to have even “small amounts” of wheat because ANY is too much. –and don’t eat at Mongolian Grill. Our family always travels with something called Gluten Flam which is basically enzymes that help us to quickly destroy gluten with which we most probably have been contaminated either at friends, family or at a restaurant. There are other brands of these gluten destroying enzymes to help us but not to be used to counteract, say, a piece of bread, or a Chinese dish. (I know that you would not do that, anyway.) We must be very responsible because we should try very hard not to ever be contaminated as it could kick into motion some new autoimmune disease.

Cyrex is not available in Australia. I work with patients in Australia and the US and use Cyrex extensively with my US patients. Sadly, much of the functional medicine testing is not available in Australia (yet). I typically recommend an elimination diet if advanced testing is not available and/or standard testing was unremarkable.

I tested positive for gluten and casein sensitivity via stool test. Then I took the cross-reactivity test and lit the whole thing up. If eating one of these cross-reactive items is the equivalent of eating gluten, then it would be necessary to find out everything that cross-reacts for me, and eliminate it. The problem is, the list of potential offenders is constantly growing, and might even include substances produced by gut bacteria. I don’t see winning at this! At this point, I don’t experience much health difference between eating everything but gluten, and being on the gaps diet or low carb paleo, which cause me to loose way too much weight. I haven’t had gluten in 5 yrs, but doubt I would have an overt reaction to it. Thoughts? (I have low level Hashis, osteoporosis, endometriosis, a skin issue, and possible head injury mucking up the mood and cognition outcomes)

Hey, by elimination test, I have verified that I’m gluten intolerant. No celiac disease though, the test was negative. My allergologist is very open, she told me it is pretty straightforward based on the self-test that I have intolerance and should just stay away from gluten as it makes my symptoms worse. I avoid milk too, though cheese, kefir and yogurt are fine in small amounts. Especially those made from goat milk. Due to having to follow the FODMAP diet mixed with low-histamine diet, my choices are pretty limited. Noone really makes fun of me and usually the restaurants are also quite flexible too (if you warn them in advance). Peeps accept it but don’t really get it until they see me after one meal that had a secret ingredient I wasn’t supposed to eat: bloated to the point of pain, itching (and scratching it till the skin is full with red marks), skin outbreak (big red spots looking like pimple but they just bleed if you touch them), brain fog… My new blood results are just in, wish me luck! 🙂 Hoping to eat more veggies and fruits this year!

Thank you for posting this. In September of 2015, I was diagnosed with PCOS. I immediately stopped eating gluten and within 10 days my cholesterol dropped over 50 points. It has continued to drop since then. For 5 years I was in and out of the ER and doctors with the same answer every time – you’re fine. I would have abdominal pain and a low grade fever – felt like it could be a UTI but my tests always came back negative. I went to a urologist, gyno-urologist, internist, infectious disease specialist and finally, my dentist recommended I go to a fertility specialist. He finally figured out it’s PCOS.

Every since going gluten-free, I have felt much better. People say I look better and have a normal color to my skin now. My pain is virtually gone and I still can’t believe it was all caused by gluten.

I do have flare ups where I may have accidentally ingested gluten. Mine do not present with GI issues, but I get really itchy skin, feeling really hot, running a low-grade fever between 99 and 100 and really bad night sweats. Sometimes I even develop a really lovely rash. I am definitely asking my doctor to conduct one of the Array 3 tests on me. Knowing exactly what it is that causes my issues will definitely help me control it better.

Hi I diagnosed myself, then went to the Doctor and told him i suspected i had Coeliac Disease, the Gastroenterologist said id be very clever if i was right about this, well, i was. This was 23 years ago. After eating GF grains for all this time, i am now unable to tolerate them at all, due to gut dysbiosis, which happened after a parasitic infection. I believe one of my daughters has Coeliac but her tests keep coming back negative. I am interested in this post for this reason. i have never been vilified by anyone, Doctors or friends. I educate myself to keep up with the latest research. But i am worried about my daughter.

I have read a lot of forums and on gluten sensitivity. One woman said all her tests for Coeliac Disease came back negative. She had extreme debilitating joint pain on the verge of being bed ridden. After eliminating gluten it changed her life for the better as her pain disappeared.

I think there is more going on than just what they test for and an elimination diet sounds wise.

I myself have gone gluten free. All the results from this were: no more constipation ( I suffered with this since earliest memory and had a foot of my bowel removed because of a bad polyp); no more horrid rotten breath ( and I mean like rotting vegetables type rotten); no more bleeding gums when I floss; I have a sense of smell now and I can breath through my nose all the time; I drink water and seem to retain it (hard explain I never seemed to hold water); I am not as hungry ( I used to obsess about my next meal even just after eating ) Amazing! Reintroduced gluten and terrible bloating, horrible mood and feeling generally crap.

Hope you daughter figures out what is going on with her body. Best wishes to you and your daughter.

I have cerebellar ataxia (gluten ataxia) and am trying to find treatment outside of Kaiser, as the docs there think I am fine. Fine to me, would be the quality of life that I had prior to being diagnosed with Ataxia. I am a CrossFit athlete, am used to a very active life, and now am left to struggle to figure out how to make the most out of each day. I have been following Paleo for over 5 years and FODMAP over a year. FODMAP did help some of the digestive issues. It is frustrating that there is not more research on Ataxia. I hope more research will be dedicated to NCGS in hopes to help others such as myself. Other than being strict with food, avoiding cross contamination with gluten and exercising, I don’t know of any other cure. I also have hypothyroidism, which is common with this auto immune issue. If anyone reading this has any helpful information I would appreciate you positing to help me and so many that are suffering from this. Thank you for your time.

Sandi, I highly suspect that you also have a condition called Leaky Gut, or an impermeability of the gut lining. I would highly recommend reading a book, The Autoimmune Solution, by Amy Myers, M.D. You CAN feel better! Also, check out The Leaky Gut Program from Dr. Josh Axe. I have used both of these resources with success. It takes months to heal the gut, but don’t give up! Good luck!

Hi! Have you heard of RevitalX it is great for healing a leaky gut, when you get into trouble be sure to take the recommended amount morning and evening. I too avoid gluten but get contaminated sometimes.

Chris, I lived in the Philippines and got Amoeba Hystolica. Both protozoa and larva and treated with heavy antibiotics. I returned to the states and for a year after I had what I called bad stomach days, could not leave the house, extreme bloating, gas, pain, above my belly button. I would actually get sore to the touch. Gastro docs want to give you meds and call it irritable bowel syndrome. A year after the amoeba at age 50, my appendix ruptured, not common at this age. During my healing time I started researching gluten sensitivity because how do you all of a sudden get irritable bowel syndrome. Once I removed gluten my life changed. On the return visit to gastro doc for follow-up colonoscopy he commented that I had lost a lot of weight, 25 lbs. asked me how, I said I removed gluten from my diet and the weightloss was secondary to the elimination of all my stomach issues. Today, even eating beans no longer causes me a gut issue. But I do eat gluten every once in awhile and within hours my stomach issues surface, up all night with stomach pain and sore to the touch the next day. I will remain gluten free to be pain free.

I had DH for 40 years (age 4-44). I was told it was psoriasis or dermatitis depending on the Dr. and the severity of it at the times of my appointments. My husband would put steroid cream on the back of my neck because I would forget to. Once I went to a rapid care, tearful, because I had an eye infection, ear infection, yeast infection and oozing, scaly, itching skin rash. The dr said, “Why do you have so many infections?” I think he thought I had HIV. He said my skin problem was from too much showering but I knew that was not true. When my daughter came down with my skin trouble I thought she had chicken pox. At the Dr office I was told it was a staff infection. Later we were told dermatitis and the eczema. I googled skin disorders and learned about DH. The photos looked familiar! I had my girl tested for CD and it came back (weak) positive! The numbers on the panel were just a little over the normal range. We stopped gluten and she is 100% percent better and I am 80% better. I am now suspecting that I need to stop dairy if I want to try for 100%

I have had hives since October 2015. Nothing was working.I was seen by a nurse practionner who prescribed prednisone and Keflex. I found I was allergic to Keflex when I broke out more. She switched me to Tetracycline and Prednisone. Still no results, she sent me to a dermatologist who had me take Allegra 180 mg twice a day, Cimitidine 400 mg twice a day, Benadryl at night and ice packs. In January 2016 I had it. Nothing was working.So I went to an Acupuncturist. He is from China but a graduate in clinical pharmacology from Northwestern. He said ” Try not eating any thing with gluten.” I went for 4 days with no hives. I made some homemade chicken and rice soup for my wife. I decided to have bowl. No problems. The next day, I had a bowl for dinner with saltine crackers. I woke up in the night with hives here and there. The next day I was back at the Acupuncturist . I told him what happened. Again he said , Don’t eat things with gluten. My brother is a retired doctor. I told him of this and he said gluten is only for people with GI problems. After researching around other sites, I am convinced it is a developed condition. My favorite snack is a peanut butter and jelly sandwich. I had these almost everyday from the onset of the hives (which were caused by an insect bite). It might be an acquired situation. I am going to stay gluten free for at least a month of no more hives and see if it corrects itself. I just am wondering why there is a sudden rise in cases and how before these Hives, I was not gluten intolerant. OH.. I am 68

My friend had the gluten Cyrex test as she felt gluten was not good for her. She feels worse on gluten (joints, skin) and also has hormonal health issues. She was very suprised when the results came back negative despite eating gluten for months before the test. Can the test be wrong or is it possible someone is still unable to tolerate gluten despite normal results from Cyrex. She was left feeling very confused.

Hi Claire, Your friend should have a total IgA and total IgG lab test run on her blood. If she is IgA or IgG deficient then the Cyrex test will appear negative because her immune system can not mount an antibody response. Nadine Grzeskowiak, RN BSN CEN Gluten Free RN

The science shows that gluten causes the enterocytes (the cells that line the gut) to excrete zonulin, a substance that causes the enterocytes to loosen and allow the contents of the gut to get into the blood. This includes uncleaved amino acids in the form of protein chains like gluten and casein, as well as pieces bacterial cell walls. These lipopolysaccharides cause inflammation anywhere in the body that has had previous damage. Continuing to eat gluten results in tissue damage.

I have had issues with my lungs. I have ncgs. Self diagnosed by multiple gluten challenges. I can eat a little wheat here and there but if I keep eating little portions day after day symptoms will start to show up. Subtle headache,joint pain, tingling in hands and feet and would start to feel bloated and feel like I was breathing through a cotton ball. All symptoms would disappear after a few days of no consumption of gluten. Fyi. I was also tested for cd and the tests came back negative.

Hi, Chris! I really want to thank you for this article. I have never been formally diagnosed with gluten intolerance, but all I know is I had serious stomach issues for one and a half years, and only felt totally better when I quit gluten (and cut down on quite a bit of dairy and added sugar). I was frustrated before because my doctor didn’t take my stomach pain seriously (he never takes any of my pains seriously– and once I had TWO KIDNEY STONES! And he insisted it was “only menstrual cramps” before the CAT.) Once I finally convinced him to run a CD test, it came back negative.

Then, once I decided to be gluten-free just to try it, many friends and family judged me, telling me that it was “junk science.” And I also got a lot of “haters” in the CD community because I wasn’t formally diagnosed with CD and still thought gluten was the problem. I wasn’t trying to down-play their pain; I know it’s probably worse than mine! But it didn’t mean that my pain wasn’t still real.

It’s so nice to hear from a professional that I probably didn’t just make up this pain in my head. Thank you for sharing and creating awareness!

I have been facing IBS since last 3 years. Some of the worse symptoms I faced were weight loss, severe hair fall, rapid greying of hair (now almost 60%) and hypothyroidism I was detected with CD almost 4 months back and have been on gluten free diet since then. I felt a big relief in the starting with things gradually falling into place. But the symptoms have again come back despite the fact that I am still on Gluten Free diet. In India CD is still something people are unaware of and it actually makes life miserable. Is anyone facing the same problem as mine? (still having the symptoms despite being on Gluten Free diet). Please suggest.

Dr. Kenneth Fine who’s lab tested me 10 years ago told me that the majority of people who are gluten-intolerant are also dairy-intolerant. Until I also stopped eating cow’s milk, many of the symptoms lingered. This has to do with the size of the protein molecule and not lactose. Goat and sheep milks are okay in small doses.

I just found out I have a problem with gluten my life has been a living hell with joint pain and inflammation even my tailbone was affected along with horrible digestive problem I’ve been gluten free for to day and my joint pain is almost gone and yes I do have a problem with dairy product and coffee I think coffee is a problem because of mold inseam to haven’t problem with foods the have mold and have eliminated them as well ….i hope in time my digestive system will improve as well I did this on my own I have up on trying to get help from any doctors who seem to be clueless unfortunately

I have developed idopathic peripheral neuropathy. My deamidated gliadin peptide IGG came back a high positive but my genetic test came back negative for celiac. Is it possible that my neuropathy is still related to non-celiac gluten sensitivity?

Lisa, I was diagnosed with idiopathic small fiber neuropathy in 2011. I was 65 y/o. All my neuro tests and A1C (I don’t have diabetes) were normal. I was started on Neurontin to help control the burning pain in my feet. In 2013 I read that gluten could cause neuropathy and decide to stop grain. In three days, I had less burning and weened off Neurontin. I started following Chris Kresser and Sarah Ballentyne (Paleo Mom). I changed to a Paleo lifestyle, no processed food 99.9 percent of the time, did Sarah’s autoimmune elimination diet, detoxed all my household cleaners, started taking digestive enzymes and probiotics, and recently detoxed my personal care and cosmetic products. Each change I made improved my symptoms. I did not have any other testing. I just went for the lifestyle changes to improve my health and wellness. This month I am finally pain free and can sleep in bed with the blankets tucked in. I’m replying to you to give you encouragement. I hope you find what works for you to relieve you of your symptoms.

65 and also recently diagnosed w idiopathic pn. I call baloney on this this idiopathic thing. LOVE hearing stories about healthy living and the reversal of pn. Off I go!! Thanks for sharing and providing hope!

I was diagnosed with IBS many years ago. Before that, I knew I was both lactose and whey intolerant. I had testing done for celiac over a period of several years and it all came back positive, except the blood test. The GI doctor said that was the most confusing thing ever! Well, really! So they told me it was up to me if I wanted to avoid gluten or not. Well, a few years went by and due to several other sever health issues I completely forgot about the gluten problem. Thus past year I noticed I kept feeling nauseous and pinpointed it was due to eating gluten heavy meals. Since then I’ve cut out gluten completely and feel so much better for it. I stumbled upon this article because I ate some poor food choices this past week that don’t work well with the IBS, lactose intolerance, whey intolerance, or gluten intolerance and was feeling horrible! With having IBS I’ve learned a few things I just can’t eat over the years, most co-inside with being gluten free. I stick with low fat proteins and non complex wheat free carbs are the basis of my diet. I steer clear of seeds, fruits with seeds, raw veggies, green veggies (which is what everyone tell people to eat a lot of, but they can really do a number on people with IBS), sugar, fatty foods, fatty cuts of meat. I usually eat my veggies at the end of my meals like they do in Europe that way there’s other food in the digestive system and it’s easier for it to handle (salads are ok, but it’s the stuff like broccoli, kale, etc.). A side from gluten, lactose, and whey, I also have a low tolerance to eggs. I have already been diagnosed with Fibromyalgia so I know once you have one autoimmunity deficiency you are more likely to develop another one.

Hi I am a 51 year old female. My doctor suggested trying a gluten, wheat, dairy free diet 3 weeks ago, after almost 40 years of digestive upsets mostly intense severe bloating, knee buckling pain and chronic spontaneous diarrhea. I remember as a 10 year old in school sitting for hours on the toilet after eating school dinners, I felt tired and ill as a child and worse as a teenager going out eating fast foods, I tested negative for Coeliacs, I wished I had tried this diet earlier or that my previous doctors had advised me better, I feel great I have more energy my eyes are sparkling people have noticed I look better my skin is rosy again and the best thing is no more extreme bloating in fact I am now 2 dress sizes smaller in just 3 weeks, I am not hungry I am just happy that it seems to be working, for the first time in decades I feel well, perhaps going out for a meal will be problamatic, but to be honest I don’t intend to eat out at all if I can help it, I simply cannot go back to the worsening digestive issues I had for years and years I was so unhappy and poorly, I walked my dog for 3 miles yesterday I have not done that in decades with any of my previous dogs as I had zero energy I was always asleep throughout the day, all I can say is I feel I have been reborn and given a second chance at life.

I avoided gluten for years because eating it made me feel like I was in a coma (extreme fatigue and everything seemed to be in slow motion). My family thought it was a ‘control issue’ and generally made me feel like the problem was in my head, not my gut. Well, my first child pooped blood 12 times a day for three months until we eliminated both dairy and gluten. When I weaned him and went back to eating them, I felt awful. Same story with second child. Now I avoid cow’s milk and gluten assiduously and, when rudely questioned, I calmly state that I don’t care to produce another child who poops blood 12 times a day. That usually silences the skeptics.

It makes life hard when the people you love don’t believe what you’re going through and think you’ve lost it. I’ve always said I can’t blame family and friends for not understanding but I can for not believing. I stay clear of these. Be well and kudos on your decision.

I am a State Registered UK dietitian and self-diagnsed my own NCGS in 2010 after 25 years of very poor and deteriorating health. Biopsy was negative. All my symptoms (mainly – severe migraines, brain fog, lethargy and tiredness and latterly ataxia) vanished once I had my diet correct. It took me about 1 1/2 years of trials with elimination diets to finally conclude my problems were as follows: 1. Gluten from wheat, rye, barley and oats 2. Corn gluten 3. Rice gluten 4. Cows milk protein (OK with butter and double cream) 5. Coffee 6. Allergies to brewers yeast, bakers yeast 7. Allergies to pineapple (severe) and melon

My doctors have now finally agreed with me that my problem was gluten, after intitially trying to suggest it was all ‘in my head’! I have my life back and now am 100% fit and well with zero symptoms and (halleuja!) no migraines.

Now I diangose others and am having miraculous results when people go truely gluten free! THANK YOU!

p.s. When I eat gluten by mistake: I feel nauseous and lethargic for days. My hair starts to fall out at the front of my head and I am left with a small bald patch the size of a golf ball. (It grows back eventually but thins each time). My ataxia returns – I drop things, fall over my own feet and generally have trouble co-ordinating. Sometime I even start to slur my speach like a drunk!

I seem to have the same problems as you. After ingesting gluten I have severe brain fog and migraines as my main symptoms. No GI symptoms noticeable. I have your #1,2 and 5 and slightly 3.

I recently tried going paleo and felt a lot better at first… Head was clear and more energy… However as time passed I started getting chest pains and felt high adrenaline because maybe I was starving or very low carb, but I was eating nice sizes of potatoes…

So I remember eating rice chex and I don’t remember that bothering me, like I feel like I need a carb with added vitamins because I was feeling deficient. How do you go not eating barely any carbs without starving??

I actually tried GF cheerios today and got neuro problems as well as mouth ulcers… So I will try to go back to GF rice chex and hopefully it won’t bother me.

I really want to know how you can’t eat any of those foods without feeling like u r deficient or starving? Thanks

Paul, what is your meal like that you describe as “Paleo”? Your comment focuses on just the starches. Are you eating any other kind of vegetable? Above ground veggies, especially greens are Paleo, and are more nutrient rich than anything else you can eat. If you are feeling deficient after eating isn’t it likely you are feeling a deficiency of micronutrients, like vitamins, minerals, phytonutrients, and enzymes? Hunger is often driven more by sensitivity to shortages of micronutrients than it is by shortage of calories.

I would suggest eating a varied diet that includes a broad range of vegetables. You don’t have to exclude starches, just use things like squash and sweet potatoes mixed in with veggies that are lower in calories, but high in fiber. You might be surprised how well you can get along without grains. And you might be surprised how healthy you feel. Just a suggestion to think a little differently about a Paleo diet.

It takes some planning and effort. I eat alot more proteins and tons more vegetables in place of the gluten-foods. I don’t eat bread, I already avoid potatoes bc of prediabetes, and I have substituted quinoa for rice in most cases. I can’t speak for SA in particular, as they have quite a few more sensitivities listed than just wheat gluten. It was helpful to find a website with gluten-free recipes and I know there are nutritionists who are experts at helping you nail down a good diet and still be gluten free.

Also, if you are sensitive to corn, that’s a whole barrel of worms. Corn syrup and corn byproducts are in SO MANY packaged foods, including white vinegar, ketchup, and I’d bet maybe in those GF cheerios. I have been suspecting corn sensitivity and did some research about it a while back, this was a very useful site to look through http://www.cornallergens.com/

I find the variety no problem. My main carb sources are coconut pankes, coconut paleo bread and occasionally tapioca cheese bread (made with goats cheese). I eat lots of nuts, seeds, veg and salads. Regular fish and meat. I do find I need to take regular Epsom salt baths to keep my magnesium levels up and I take supplements of D3, omega 3 and B12 (methylcobalamin). This appears to suit me and I’m now in perfect health.

I’m not starving at all. My diet is very much a paleo style one. Fortuanately I can eat nuts, eggs and coconut. So I use plenty of those. For treats I make myself tapioca cheese bread (goats cheese), coconut pancakes and paleo style cakes/bread. I do avoid recipes with a lot of natural sugar in though, such as agarve syrup, coconut sugar, maple syrup. Just because foods are natural does not necessarily make them healthy in large quantities. I take supplements of magnesium (Epsom salt baths and magnesium glycinate, vitamin D3, omega 3 and B complex).

My wife is having severe issues, we figured it was a gluten issue and she seemed to be better when she went off of gluten but now it seems rice, corn and fructose are an issue now also. She did develop a lactose issue and has had a sulfite issues for a decade. We want to go see a Dr. but not sure type to see? Do you have any advice? she did see a gastrologist and they thought it was in her head.

I feel for you both. I’m in the UK and basically had to figure it out for myself. Even as a qualified State Registered Dietitian I found it pretty challanging. It was a year and a half of trial and error and I still make the occasional adjustments now. The most important thing is to keep the variety in your diet otherwise you will end up with nutritional deficiencies. I developed magnesium deficiency at one point! (My GP (bless him) was convinced that I had ‘rapidly progressing MS’!!). I soon realised though and now take magnesium regularly – end of problem. Ideally you need to see a doctor or dietitian with plenty of experience of gluten free diets, so not someone newly qualified. Look towards paleo style eating.

Can I sugest for those who live in the UK? If you have a gluten problem you need to try to find someone for whom this is a specialist area. Try serching for “state registered dietitian” and “gluten specialist”. If there is not someone in your area they may do Skype consultations if you are prepared to pay up front. They will, of course, need access to your medical details. In my own practice I allow 2 hours for an initial consultation as this is how long it takes to gather all the necessary info. You need to be patient to get result and there is a learning curve.

I have “gluten intolerance”, but I was not diagnosed with celiacs. I thought maybe it was in my head, so I tried eating gluten again after being gluten-free for a while. I didn’t feel as good as I did without, so I just decided it was better not to eat it. I have high levels of stress, and I feel like that makes everything in your gut more volatile. It’d be nice know whether or not I have something other than just gluten intolerance though!

Thank you for your articles. They have given me more to think about. I have food sensitivities and they literally control my life. Over time I have eliminated most foods including dairy, red meat, soda, most nuts and seeds, and all grains other than white rice. I still have digestive pain most of the time, it’s just a matter of how severe it is from day to day. I was diagnosed with IBS several years ago. I haven’t found any treatment that helps much other than prescription drugs that leave me overly tired and unable to concentrate. Most people are understanding of the dietary restrictions. My family is understanding but gets tired of me never feeling well.

@Lee Chamberlain: Are you sick more than most people as well as your food issues? You might want to be tested for immune deficiencies. Doctors do not test for selective immune deficiencies when they should. I was recently diagnosed with IgG-1 subclass deficiency and was astonished to learn how many of my other symptoms including my severe IBS are associated with immune deficiencies. You can have auto-immune symptoms without a full blown auto-immune disease when you are in a state of immune dysregulation. Also, 1) save up the $400 and have a complete stool analysis if you haven’t done that; 2) get your thyroid checked (www.stopthethyroidmadness.com is a great resource for finding a doctor who knows how to truly test your thyroid instead of just relying on a TSH test when can vary wildly over the course of the day); 3) get tested for bacterial infection of the intestines like h. pylori and 4) if you have taken antibiotics in the last year or two consider a yeast protocol as yeast overgrowth can cause all kinds of hypersensitivity (and your body not killing yeast effectively can be part of a mild immune deficiency as it is for me). Something is underneath the food sensitivity. Keep fighting the fight to find the cause. It’s exhausting but well worth it.

Thank you so much for publishing this follow up to the research on FODMAPs that seemed to validate that gluten sensitivity wasn’t real. I was initially excited by the FODMAP research because it finally explained a lot of the digestive issues I was experiencing because of the fructans, extra fructose, and polyols many foods broke down into –which I had not ever been able to understand or treat effectively. But just as I was feeling convinced about the FODMAPs being my only problem, I realized that many of my symptoms to eating gluten are completely NON-DIGESTIVE: that is, when I eat or drink something with gluten in it, I devolve very quickly into a state of chronic fatigue, sleeping 13 hours, then waking up and stumbling around as if I am still asleep, all the while yawning over and over again until tears are streaming down my face. So, guess what–I’m still sensitive to gluten, even though I didn’t test for having celiac disease. But I wonder if I would test positively on the Cyrex Labs Array 3 test after 20 years of being gluten-free? Because, if so, I want to take the test. I am in the SF Bay Area. Can I test positively without eating gluten, and, if so, where can I ask for the test?

I have some form of a gluten intolerance. I found out because my mom had found a article about symptoms that are overlooked in diagnosing celiac, like sinus problems, skin rashes, frequent headaches, and ADD, all of which things that I had serious problems with. My mom had sent me a link to the article and as I was reading I was realizing that I had been experiencing just about every symptom on the checklist whether it was minor or extreme. I made the choice to go gluten free for a week. It wasn’t 100% gluten free because I would always sneak small bites of food, but within a couple of weeks I already felt SO much better! I could breath through my nose for the first time in what seemed like forever, my arms were slowly clearing up, I didn’t get anymore headaches, and I was able to concentrate more! The only downside to all of this was that high school had just started up, and I wasn’t allowed to have gluten free meals. I really didn’t want to bring my own lunch everyday (because I would end up eating the same thing everyday as it would be whatever my mom buys and makes for me) and I wasn’t going to have a salad every day either. The foods administrator (lunch lady) at my school has celiac herself, and I know I didn’t have celiac, instead I believed I had a mild gluten intolerance. The lunch lady said before they could give me gluten free lunches, I had to go to the doctor to get a blood test. I didn’t have time to go to the doctor, so my mom called and told them out situation and had the doctor fax my school a note to allow me to have gluten free lunches. But it wasn’t good enough for the lunch lady. She told me my doctor was supposed to write what a specifically can and cannot have. When I finally got in to see my doctor, she was upset that the lunch lady disobeyed her note, and told my specifically that I CAN have gluten free food & CANNOT have food containing gluten. She didn’t know what else to tell me. She said she would not give me a blood test as it would be a waste of time and money, and based on my symptoms I have a mild gluten intolerance and if I were to keep eating gluten the symptoms would get worse and worse, so I should just avoid gluten. The lunch lady was mad that the doctor wouldn’t order a blood test, and my doctor was mad because this lunch lady actually called my doctor’s office asking for my information. Even if I had gotten a blood test the lunch lady would not be able to see the results. Eventually, after contacting the school nurse & the principal and getting a second doctor’s note basically saying the same thing, my mom was able to straighten things out and I can finally enjoy gluten free lunches. Being only the third person in my school system with this condition, and the only one in high school with it, I’ve had to work incredibly hard to get a school lunch I can tolerate. People are always asking questions and I tell them I do not have celiac, but a gluten intolerance and I still get the symptoms to an extent. I’m always interested to learn more about my condition, because it seems that there aren’t a lot of answers for it. I even found out a girl in my lunch has a gluten intolerance, but she just cuts down on her gluten intake to manage her symptoms by bringing her lunch every day.

I am so sorry to hear how awful that experience was with your lunch lady . After reading your comment I was so intrigued to reply and I just wanna ask , when you had gluten food and wasn’t diagnosed yet did you have bad stomach pains? Like to the point where you felt like you thought you were dying ? I experienced pains like that back in April 2015 . The hospital had no idea what was wrong with me. They thought I was pregnant and ran so many tests except never thought it was gluten. I go to a GI specialist and have an endoscopy in my upper or lower abdomen I truly can’t remember . but he told me I had acid reflux disease and might have a gluten sensitivity. He then said I to get a celiac panel test done . That cost so much money I am still paying off other bills from the hospital . my question is can you still eat fast food without hurting ? I can get away with taco bell ( I know I shouldn’t) but I don’t experience pain after with that . if I eat a bagel I do instantly.

I’ve also been doing trial and error with different food. Its so hard to believe I am gluten sensitive now after 25 years ! I always had bread and whole wheat my whole life. Why all of a sudden now that people are having these issues . crazy .

While I have celiacs, I have no issue with people with gluten intolerance, however, this article is incredibly offensive. If anything, the title of this article should be “3 reason gluten intolerance may be as serious as celiacs disease.” Celiacs disease has been scientifically proven to cause serious intestinal injury and death. Gluten intolerance has not been proven to have the same effects. It is find to try to validate your medical condition, but to do so at the expense of another is not. This article is wrong, offensive, and makes me not want to support people who are gluten intolerant, though I have vigorously defended them in the past. It took doctors over a year to diagnose me with celiacs. I was malnourished, depressed and so physically weak I could barely get out of bed in the morning and would faint at least once a week. You’re tired of people telling you your health problem isn’t serious, I get that, but don’t come after mine in response.

I hear the point you are making Christine and I agree that Celiac is a more serious physical condition than NCGS. However, from the outset, I always interpreted Chris’ article, even from the phrasing of the heading “…is potentially a much larger problem than celiac disease.” to be speaking more of the incidence of NCGS, that is, the sheer number of cases. NCGS seems to be affecting more people than Celiac seems to affect.

Also, Chris explained that the situation of misunderstanding and invalidation of NCGS sufferers appears to be more serious than what is now the case for Celiac sufferers. It seems that the denial by the public today regarding NCGS is somewhat like what existed for Celiac disease itself 2 or 3 decades ago. He also explained that due to the complexity of the testing that is currently accepted vs what is required for diagnosis of NCGS, that it may continue to be undiagnosed and thus unrecognized by the medical professions for even a longer time than Celiac ever was.

I think all these considerations that were laid out in the article were convincing enough to support Chris’s claim that in certain ways, though not including actual suffering, NCGS is definitely a more serious health issue for the whole of society, as well as for the mass of misunderstood sufferers, than Celiac has been to this point in time.

In all that Chris said though, I don’t think he in any way intended to downplay the seriousness of the suffering that goes on daily for someone plagued with Celiac disease. I think he just wants to declare that it’s time to recognize that NCGS is another condition that is receiving way less than proper attention.

Vitamin C didn’t help me and I have been trying to get healthy for 20 years trying various supplements and I’ve spent plenty of money doing so. When I eat gluten my hair falls out. My daughter has Hashimoto’s and I have lupus and thyroid disease but the tests were negative although we have the most active Celiac gene. I had to have strong evidence to stop eating gluten…cause it sucks to have to give it up. My hair and health is more important than eating flour.

I have read it, and the author should be embarrassed. Any scientific article or reason-based one does not use inflammatory language such as referring to celiacs as being “phobic”. This occurs in the first paragraph.

A phobia is an irrational fear of something. If eating gluten causes significant physical distress, being “afraid” of it would not be irrational – it would instead be quite rational. That said, a desire to avoid gluten is not the same as being afraid of it.

It also fails to show the effects in-vivo, relying only on a single experiment in a lab where acid (said vitamin C) was directly added to a sample – ie. in vitro. Non-direct effects are not even considered. Would other acids have had the same effect? Is it even a valid biological process?

This last one goes direct to the heart of it’s claim: that because adding vitamin C in the form of ascorbic acid *directly* to the tissue alleviates the symptom deficiency in it is the cause of the problem to begin with.

Consider a corollary in psychology. Since adding Prozac appears to remove the symptom, depression is thus cause by Prozac deficiency. Now that sounds crazy, right? But the argument is the same.

As to the biological aspect of it, eating natural vitamin C does not cause the scenario played out in the lab as the digestive process alters and metabolizes the source depending on the bioavailability of it. Lest you think this is unrelated consider the fact that in vitro vitamin C causes oxidative damage, whereas in vivo it is not shown to have the same effect.

Ergo to conclude that because one in vitro effect was observed under a condition which does not occur naturally that gluten sensitivity is a result of vitamin C deficiency is a result driven from bias not evidence.

Finally, the article ignores the inverse possible relationship: that the effects of gluten on a sensitive body can increase the requirement for vitamin C. Thus it begs the question of which comes first, the deficiency or the condition? It is well known that being in an inflammatory condition causes an increase in the requirement for the materials the body uses to cope with it. This is why you can’t simply take samples of people w/gluten issues, and conclude that a given nutrient deficiency caused it. yet the article linked does not even consider this in it’s pursuit of “gluten isn’t a bad guy, vit-C deficiency is” position. A study in pursuit of the science would have looked for and included those who are not deficient yet still have the problem. Science is the process of making an hypothesis and trying to prove it wrong, not trying to prove it right. That means including and accounting for cases which do not support your hypothesis. Something the linked article fails to do.

And finally, it’s assertion that it is impossible to maintain a gluten free diet is laughable at best and certainly disingenuous.

I have NCGS. I too, hear what you are saying however, I suffered from liver problems, thyroid problems, my hair falling out, ataxia, depression and worst of all 25 years of severe migraines followed by four months of cluster (suicide) headaches so I am already convinced it is just as serious a coeliac disease! In fact, had I not gone gluten free I am 100% certain my life expectancy would have been no more than a few months at best. I was very, very ill. I was literally ready to commit suicide. I was that ill.

I almost died when I had a severe autoimmune reaction to FODMAPs and NCGS 12 years ago prior to being diagnosed. My gut inflammation was more than 300% than normal levels. Dr. said had my Mom brought me in 3 hours later I would have died. It took me 3 hrs to change from pj’s to clothes because the gut pain and foggyness was so severe.

So, without downplaying the gravity of Celiac Disease, I’d like to suggest that NCGS and FODMAPs should be taken just as seriously because if left undiagnosed/untreated it is just as deadly.

Since discovering my NCGS and partial FODMAP I feel like a new person without any autoimmune flare ups. I don’t wish feeling the way I did 12 years ago on anyone. Ever. Everyone’s health concerns should be taken seriously.

I determined I am gluten intolerant through trial and error. Thanks, Chris, for confirming that many who are gluten intolerant are also of eggs and casein, which I suspected due to symptoms and have long avoided.

Talk about a really rude comment. Sure you can ask about whether there are other studies out there (and it’s great you are). But making a comment implying that Iran doesn’t “believe in science” when clearly they do since there is SCIENTIFIC RESEARCH being published from there (research that doesn’t appear to be coming from the US, I might add), is uncalled for.

I love your posts! Read them again and again. They are so encouraging and clear as well as scientifically informative. This is fascinating stuff for us sufferers!

Several of my friends are gluten intolerant and when my symptoms began, they all said, “Get off gluten!” So I did and wow! What a difference! I can eat any kind of fruit and still drink coffee, but am sensitive to instant coffee and may be sensitive to eggs (ugh, I do love my eggs!) One GI doc wanted me to go back on gluten for two weeks so he could biopsy my small intestine to verify my problem, but I couldn’t do it to myself. The pain and disruption in life is just not worth it to me. I have been treated for hypothyroidism for nearly 10 years and as soon as I went off gluten (within 2 days) I started losing weight really fast (still taking my thyroid hormones). I finally got to an endocrinologist who is gradually lowering my T3 and T4 dosages, but at every 6 week appointment, my free T4 has gone higher despite lowering my exogenous intake. I still have a TSH of only 0.02 and my T3 levels follow my exogenous doses, but the T4 keeps going up. Why is that?

I can eat eggs and I don’t think I notice anything, BUT I have been told by my one doctor that ran a test of allergies that I shouldn’t due to an allergic reaction to them. I think the problem is my free range chickens are on an organic feed, but what they eat I am allergic to, so what they eat I eat through their eggs. The thyroid medicine I use to be on was the same thing they found it was what the pigs were eating I was getting through them. Not sure this makes sense or helps. Good luck finding out what you need to know.

Hello Dr. Chris, Thank you very much for the valuable information on this site. This is very much helpful to people like me who are lost with no good answers in modern medical science.

My toddler daughter (age 3) is experiencing Alopecia aeata, it started about 7-8 months back after a dose of antibiotics for her cold. Pediatrician and Dermotologists we saw in DC Metro area simply prescribed the topical liquid onintment without trying to address the root cause. We went to Homeopath in India. It got aggravated after we tried Homeopathy medicine couple of months back. Not sure whether it was medicine or the Auto immune disorder deciding take that form. Then we seeked assistance from a Naturopath in DC to identify the root cause. With the naturopath’s valuable advice we did the Cyrex tests (array 2, array 3 and array 4). Some Array 3 test results have shown she is allergic to gluten. Naturopath advised cutting off gluten and few supplements (Iron, Vitamin D, Thyroforce) from Lab corp test results which indicated these deficiencies. I wanted to check with you following numbers whether you see any direct/indirect relationship to the alopecia aerata condition she is suffering.

Also other tests of diary and egg have come negative and cross food gluten tests also have come negative, although we have put her on goat milk. We have seen some improvements after shifting her to goat’s milk in terms of her energy level.

Since she is 3 and vegetarian, not sure what other changes might help. If you can think of any, please let us know.

Thank you very much for your time. Appreciate your help and support in understanding and resolving my daughter’s alopecia aerata condition.

How did I find out I have NCGS? I went on a low-carb diet to lose weight and I cut out all bread, pasta, crackers etc. Within a couple of weeks I stopped having chronic migraines, asthma, canker sores, painful joints, and more. Gone! But I still hadn’t figured out it was gluten sensitivity until I ate some pasta for dinner at a friend’s house. That night my chest was tight, I was wheezing, and I had to use my inhaler. Shortly after that I had some braised short ribs at a restaurant and I knew there must be flour in the dish because I felt wheezy and short of breath soon after eating it.

Most people are tolerant and sympathetic and make sure to have some GF crackers for me to eat, but there were a couple “friends” who sent me the NYT article to prove some point.

My sister has had IBS and Crohn’s for decades and I am convinced she is probably gluten intolerant and have told her to try giving up wheat for a month, but she doesn’t want to hear it.

By the way, I have eaten [small amounts of] pasta and bread in other countries without any noticeable ill effects. So it could be something in American wheat besides gluten. Whatever. I’m just glad I finally, at age 65, discovered my NCGS and got rid of all those pesky illnesses. The migraines were debilitating and I took asthma medication daily for 25 years.

Say what you want about GF products, but I am grateful for the companies who make them. It means I can have cake on my birthday or crackers at a party.

After my husband was diagnosed by a rheumatologist with Fibromyalgia, I went on the hunt for a reason he was feeling so sick. I thought he may have a gluten intolerance or candida overgrowth so he went on a strict candida and gluten free diet for 30 days. I have to note that after 1 week he was pain free. He had been having excruciating pain for over a year. We slowly introduced sugar, caffeine and then gluten back into his diet and he only reacted to the gluten. I have also had IBS for as long as I can remember. I also removed gluten from my diet and my bloating, stomach pain and gas are gone. My brain fog is gone and I wake up feeling refreshed now. Gluten sensitivity is real. I have been a very vocal advocate for going gluten free and we are so glad that we did.

I gave up wheat a year and half ago at the suggestion of my naturopath, with great results-no more diarrhea.I also added enteric coated peppermint. Bloating and terrific gas attacks remained. At the suggestion of of gastroenterologist I went on the FODMAP diet for these symptoms also with great results-no more gas. Bloating remained. HOWEVER, after one month on FODMAP I developed severe diarrhea requiring immodium several times a day in order to have any quality of life. The stool tests were negative. Manual examination of my abdomen was negative except for baseline tenderness.The diarrhea lasted about seven weeks and has lessoned a great deal after adding Allign Probiotic. I have added back some FODMAPS and am making good progress. Still to be avoided are gluten, honey, inulin, some artificial sweeteners (such as mannitol),caffeine,soy and a few other items, and all foods must be chewed well,eaten slowly,cannot be too cold, must be in moderate amounts so as not stretch my stomach and the same foods must not be repeated several days in a row except for my staple rice, a half cup of 2% Lactaid milk for my rice cereal, and one serving of yogurt.I have graduated from a bland diet with no raw foods to a more normal diet that includes salad. Unfortunately I developed a urinary tract infection(Strep B) and am forced to take ampicillin for a week. Hope it goes well for me. I try to take the Allign between the two doses of antibiotic so as not kill it right away. Trying to stay calm and carry on.

NY Times article July 4 suggesting “gluten haters” should be focused on a generalized increase in autoimmune sensitivity contains a link to a USDA study with following amazing tidbit: “Gluten fractionated from wheat flour by washing starch granules from a dough (sometimes called vital gluten) is often added to food products to achieve improved product characteristics. About 80% of the gluten used in the United States is importedmainly from Australia, the European Union, Canada, and China. The question of how much vital gluten contributes to the total consumption of gluten (wheat flour and wheat grain + vital gluten) is complicated by a lack of accessible information about gluten production and imports for the United States in recent years and by indications that imports are rising rapidly…. Thus, it appears that vital gluten consumption has tripled since 1977. This increase is of interest because it is in the time frame that fits with the predictions of an increase in celiac disease. It is difficult to say whether or not this increase in vital gluten consumption might contribute to an increase in the incidence of celiac diseaseparticularly when compared to the much larger intake of gluten from the consumption of wheat flour (11−12 lb/5.0−5.5 kg) per person). Similarly, I note that, although wheat flour consumption seems to be decreasing slightly in recent years (Figure 5), there was an increase in the yearly consumption of wheat flour of about 35 lb (15.9 kg) per person in the period from 1970 to 2000, which would correspond to an additional 2.9 lb (1.3 kg) of gluten per person from that extra flour intake, so that the 1970 intake of 9.1 pounds (4.1 kg) of gluten (from flour or grain) had increased to 12 pounds (5.4 kg) in 2000. It may be noted that whole wheat products, which are increasing in consumption for health reasons (especially the higher fiber content), often have vital gluten added to them to compensate for the negative effects of the ground whole grain on quality factors, such as loaf volume in breadmaking. This increase amounts to about 1.5−2.0 percentage points in product protein content, but the significance (if any) of this increase is not knownit must be considered in the context of other factors. There is evidence that the D genome of bread wheat has more epitopes active in celiac disease than the A and B genomes,21 and some of these might be the most active epitopes.” So much for whole wheat!

I know Gluten was causing my really bad mental health problems. Paranoid I had cancer from childhood, anxiety, depression, social withdrawal. I started thinking I was autistic. Got to the point I couldn’t bear to face the smallest task. I only discovered the gluten cause because of eczema and maybe some intuition. And then the slow realisation that my brain had been damaged began to dawn on me.The last time I ate gluten…hot feeling over head/face, strange dizzyness, occasionally flinching, strong head pulse and scared of the darkness at night. Feeling paranoid is the worst thing, you can’t enjoy life at all. But I’m better now, just feel so sorry for the people who are suffering and probably torturing themselves

Matt thanks for sharing, some of this sounds familiar to what I have been experiencing as well. I had my DNA health done and it shows two genes from each of my parents for the gluten genes. My sister has paranoia schizophrenia and I feel it was brought on by eating glutens. I have been noticing lately when I eat organic onions my head gets hot. If I get corn in something (very allergic to it) my brain hurts, little seizures, headaches/migraines, and what you describe here is what I feel. I have strange things happening like the sky is closing in on me, and the new one is when it gets dark I feel trap and can’t breath as well (panic attacks/anxiety) I am so glad you are better 🙂 and sharing your experience with others.

I wish I could afford a test like the one mentioned in the article. I know I am gluten/dairy sensitive and would love to know what else to avoid. I have UC so it is very important to know which foods are “safe” and which aren’t. Sadly cost is keeping me from finding out this pertinent information. Thanks for a great article.

I am slowly coming to the conclusion that I am gluten intolerant. I frequently experience extreme indigestion and heartburn, and I’m starting to notice a correlation between this and my consumption of bread. I am cutting bread from my diet for this reason. If I eat hot dogs, I will be dying from heartburn later. I used to think it was just the dogs, but if I instead eat the weiners cut up over beans without the bun, then I don’t experience the same degree of indigestion later. It takes a long time and deliberate, intentional observations and changes to come to these conclusions. I’m sure a food and effects journal would help.

I thought it was just bread too Jeff. But if you look at the ingredients, there is gluten in hot dogs too. I read have to read the back to see if it sayes gluten free. If it doesn’t, I usually don;t eat it. Then again, whipped topping makes me blow up and hurt but can’t find what is in the whipped that causes this.

Hi Debbie, Are you at all familiar with sulfite sensitivity? Whipped topping contains a lot of corn syrup which is loaded with sulfites only they don’t have to label it because it’s considered part of the “process” rather than an added ingredient in corn syrup & corn starch. Sulfites are hidden in a lot of foods due its use being a part of the “process”. So not having to list it for that reason is a much used labeling loophole. Sulfite sensitivity creates all sorts of individual health issues. Sulfite sensitivity is not considered an allergy because it is actually a deficiency of an enzyme, sulfite oxidase, which converts the unusable sulfites into the form the body needs & uses a lot of, sulfates. So not being able to convert sulfites to sulfates has a cumulative affect which creates a toxicity in a way unique to you. I could go on but try putting sulfite &/or sulfite sensitivity &/or foods with sulfites in your search bar & see where it leads you in regard to a possible connection to your symptoms. I obviously have a sulfite sensitivity, runs in my family, as does gluten intolerance & other food sensitivities. I also take nature throid. Am 58 & spent decades figuring out my health issues & am still working on it but I can’t imagine what shape I’d be in if I hadn’t done so. I wish you well in your search. It is worth it to feel well & be able to function.

I had never heard of the endometriosis and gluten connection previously. I had 3 surgeries for endometriosis, including a hysterectomy. Twenty years ago, I was diagnosed with fibromyalgia by The Mayo Clinic. I found out I was gluten-intolerant 7 years ago. After eliminating gluten (and dairy), my widespread fibro pains vanished. I was told by a gluten researcher that the body often reacts to dairy as well due to the size of its molecule … the body mistakes it for gluten). Although the pain disappeared, I was still left with the chronic fatigue, brain fog and constant head/neck pain. I have since discovered that I have high kryptopyrroles in the urine and issues with MTHFR. I also found out I have high lead and mercury levels. Those with continuing issues at the level of fibro, CFS, etc. could be helped by testing these as well.

I have had problems with my skin for several years, digestive issues, and now after been diagnosed with Mgus, I was recommended to follow gluten free diet. I have celiac disease predisposition on Dna. And now I have solved my skin problems with gf diet, and the Mgus spike is stable…

I am 56. My gall bladder was removed when I was 19 due to horrible attacks of pain. At age 28 I was under 100 pounds. I went into therapy because I didn’t want to live anymore; the pain and the psychological aspects it caused were that bad. And, since doctors couldn’t find the cause, it must be in my head. I gave up every kind of food at one point or another. Nothing gave complete relief because I didn’t know how to do it right and no one I knew of was talking about this issue. Finally, I heard about gluten intolerance – not just wheat allergy. It took more time to figure out the details. Finally, eliminating gluten and all grains ended my pain a few years ago.It didn’t matter to me whether or not I was celiac. Ironically, this spring an ENT insisted on testing me for celiac disease, saying I would need to be monitored for intestinal cancer if I was a celiac. I was positive in only one marker and so considered negative for celiac. My being Gluten intolerant was no big deal. I felt a lot of shame in the past, hid my issues from others and stopped going to doctors about them. The plus side is I became very knowledgeable myself. Thank you Chris, for your very important work and for spreading the word especially in the face of doubters. You are helping to end suffering. And, thanks to all who shared your story. Someone sharing their story with me was how my healing began.

I don’t mean to oversimplify the Cyrex Array 3 test results but if someone (like your example client) had a reaction to the gliadin-transglutaminase complex indicating an autoimmune response, would you infer that they had celiac disease as opposed to NCGS? Either way, the g-f diet is necessary, but I guess I’m just curious for “naming” purposes!

Gluten has become my major nemesis. I have never found it harder to quit consuming something. Cigarettes was easier for me. I will overcome this though, it’s a matter of time. Love your podcast. Thanks Bill

I totally believe that NCGS is a form of Celiac that doctors have yet to find a way to verify and understand!

MANY many Doctors spent 40 years – 4 long decades telling me there was absolutely NOTHING wrong with me. I had to be a hysterical person looking for attention or some other reason to “want to” be sick. Why would they suddenly know all there is to know?

I have been on a gluten free diet for the last 4 month and have dramatically improved my abdominal pain. I also have stage 4 endometriosis . I have noticed since going GF that my pain is amost non existent ! I am going to be tested for celiac. Do you find that there is a connection between gluten intolerance and endometriosis ? And living in Ontario Canada what is tests should I be asking my GP for regarding FODMAP AND GLUTEN TESTING.

I am currently a patient of Chris. I also have stage 4 endometriosis and I had this Cyrex lab done 3 weeks ago which showed gluten and wheat intolerance. My question to him was yours exactly, and the response was that many people with endo have digestive problems. I don’t recall him being so bold as to say NCGI is the root cause from which all things come, but he did at least say that he’s aware of a link between endo and digestive disorders (which could be gluten as well as other food intolerances I suppose).

I have only been gluten free for 3 weeks and the only thing I’ve noticed is an improvement of the skin on my arms feeling softer/smoother. That’s all good and great but I’m patiently waiting to see if there will be a reduction in endo pain and improvement of hypothyroidism. I take comfort that you report a reduction of symptoms. It’s a beastly illness that’s taken over my life.

I had my first (out of four) laparoscopies for endometriosis when I was 28. Instead of taking the medicine the ob-gyn recommended to slow the disease I decided to go the “healthy” route, cutting all grains out of my diet, among other things. Didn’t help me one bit – the endometriosis continued to get worse. At age 35 when I got married and wanted children the damage from the endo was far too extensive,

Hi, You can’t get tested for celiac because you gave up Gluten. You must be eating it to be tested. if you have given it up, you must consume it for 10-12 weeks or your test is inaccurate. They should have told you that. Your Doctor was irresponsible. Even the Cyrex Lab test is not very accurate after giving up gluten.

However, you can be tested for gluten-intolerance via a gene test whether or not gluten is being eaten. My daughter and I were tested several years ago via enterolab.com. Finding out that sensitivity and eliminating gluten (& cow dairy) made a major difference in both of our lives. She no longer has stomach issues and breakouts, and I no longer have severe, wide-spread pain from fibromyalgia (diagnosed by the Mayo Clinic 20 yrs. ago). Though I’m still coping with the residual fatigue and brain fog, these are not nearly as bad. I’m now working on detoxing heavy metals as the challenge test recently showed a serious overload of mercury and lead. These are likely having a major impact on my brain and mitochondria. When people ask what it’s like to have fibro, I’ve always said, it feels like I have lead in my veins. Turns out I do!

When I became Ill, I suspected it was something I was eating. So I kept a food diary of everything I ate and the symptoms I experienced after each meal. It didn’t take long to identify that wheat, rye and barley were making me ill. (Passing out after having eating a nine-grain sandwich at Panera Bread was a big hint that I couldn’t tolerate those nine different grains of wheat!)

I showed this diary to my PCP who said I was just imagining this because he had blood tested me for celiac disease and I didn’t have it. So it was “impossible” for me to be sick from wheat, rye or barley.

I was tempted to just self diagnose at that point, but decided to consult with one of the best allergists at Children’s Hospital of Pittsburgh instead.

He looked at all my records and my food diary and immediately diagnosed me as “gluten intolerant”. He was also the first doctor to ever explain to me the difference between celiac disease and what we now call NCGS.

I explained that my PCP said this was impossible. My allergist didn’t miss a beat and replied: “Your PCP is wrong!”

I was hoping my allergist could cure me, but he told me that there was no cure; that only a gluten free diet would work and that like a celiac, I’d be on this for life. He dug through his files and gave a documentation on the GF diet. He said it was the only medicine I would need.

So I went gluten free right then and there and within a few days most of my symptoms were gone. In a month I was my old self again. I’ve been 100% gluten free ever since.

>Have you felt judged or criticized by your friends or by your doctor for following a gluten-free diet?

Yes, my PCP wanted me to take six months worth of Valium to cure my “obsession” that I was ill. Instead I took my allergist’s advice and went gluten free. I also got a new PCP.

That was ten years ago. I haven’t regretted either decision. It gave me my life back!

I tried a gluten-free diet to see if I could gain more energy, as I’ve had ME/CFS for 26 years. That hasn’t happened, but the migraines stopped, and allergic reactions have lessened. Hayfever was a major issue every summer since the age of 10. Now aged 50 I can go outside medication free. Bliss!

When I had some gluten accidentally, a few months into my trial, glands in my throat became swollen, and I had a migraine for the next two days. I now energy test everything I buy, and carefully read all labels.

I’ve never been tested for gluten intolerance, but I don’t feel I need to. I know what my body is telling me, and it shouts when I take gluten onboard.

Thank you for such a great article. I’m so sick of the gluten-free haters. We’ve taken to telling everyone my daughter and I have CD just to avoid a endless debate.

After my second child and second c-section I experienced terrible stomach pain. My GP just brushed it aside and said it was from scar tissue and to take ibrupofen. I literally was unable to stand from the pain and not interested in constantly ingesting pain killers. Purely by accident I didn’t eat gluten for 24 hours and the pain was gone. I had never had a reaction to gluten, that I knew of, before my daughter was born.

Meanwhile I had a very unsettled baby who screamed in pain all night and had terrible ezxema to the point where her skin was cracked. No one could offer a solution. We took her off gluten and with 24 hours she was a perfectly happy little girl. Her skin cleared up and she was no longer in pain.

Have you ever heard of pregnancy induced NCGS that become apparent when a child with CD or NGCS (she’s undiagnosed) is born?

My symptoms appeared when I had my second child. While both children have tested negative for CD, both of my genes are “bad” so they have at least one bad one. My second born is 6 and often complains of stomach pain and has other indicators for CD so I believe that there is a link there, but haven’t taken the step to fully eliminate gluten YET.

I went on a GF diet as a last resort 18 months after being told I just had an anxiety disorder and most of my symptoms disappeared or substantially improved — ataxia, migraines, generalized anxiety, etc. I believe that the symptoms were brought on by the stress to my body of having the second child and exacerbated by the death of my father — another huge stressor.

The celiac specialist I saw 6 months AFTER I diagnosed myself with a gluten issue says that she believes I have CD even if the traditional tests didn’t pick it up and that the children should be given gluten a maximum of once per day given my genetic profile.

I know that it could also be a sign of Hypothyroidism. Very often Hypothyroidism is triggered by giving birth. Worth looking into, but make sure they test more than just TSH. They should be checking T4 and Free T3 also. The “acceptable” lab levels should be checked against those published by Hypothyroid Mom – she can be found on Facebook and has an amazing website that is supportive of gluten free and has wonderful recipes too! Hope you find this helpful!

It is my understanding that it isn’t the ‘gluten’! It’s the ‘gliadin’.

Gliadin is a class of proteins present in wheat and several other cereals within the grass genus Triticum. Gliadins, which are a component of gluten, are essential for giving bread the ability to rise properly during baking. Gliadins and glutenins are the two main components of the gluten fraction of the wheat seed.

I was a vegetarian for 5 years, during which time I consumed a lot of gluten-containing products, from breads to almost entirely gluten-based meat substitutes. At this time I was young and pretty uneducated about gluten-related health issues in general. Progressively over the 5 years I lost energy, became more and more tired and listless, and developed almost constant abdominal pain and bloating, but it happened so gradually that it was hard to pinpoint any cause. I got tested and drugged for everything under the sun, it seems, from thyroid disease to cushing’s syndrome, PCOS, IBS, lactose intolerance, various food sensitivities and deficiencies…nothing really came up positive, but the doctors said, “try the treatment for it anyway, maybe it’ll work.” (For some reason, gluten-sensitivity or celiac never even came up in discussion). Some things seemed to help a little, others not at all, but eventually the symptoms came to be attributed to my not eating meat, even though I was very diligent about getting balanced nutrients in general.

I put meat back into my diet and stopped with the gluteny meat substitutes, and I did feel better overall, but some of the problems remained, maybe on a smaller scale. I still felt like I got tired easily, my appetite was messed up, and when I did eat, more often than not I’d get abdominal cramps and bloating, and sometimes even vomiting. I developed a brachial neuritis that my doctor said was probably autoimmune.

Then one day, out of the blue, I broke out in a horrible itchy rash (that looked like many, many small hives) that started around my knees and progressively spread down my legs and up my body. At first it was all over, then slowly subsided to migrating patches, then to a general itchy sensation on the skin that would flare up if I touched or scratched anywhere (dermatographia?), and finally to itchy patches that would appear under certain conditions, like when I got hot or after I ate. The whole process lasted about 2 months and allergy tests all came back negative. I had no idea what was going on, but I did notice that my abdominal symptoms got much worse after it happened. I could hardly eat anything. Doctors were stumped, I was stumped.

Then one night I had a dream that I was eating bread, and as I ate it it turned to poisonous mushrooms in my hands and in my mouth. I woke up nauseated, but suddenly remembered that I’d heard something about a disease where people couldn’t eat bread because of some protein in wheat (I think my boyfriend’s sister had it). So I wondered if my body subconsciously knew what was wrong and was trying to tell me. Eliminating wheat from the diet was about the only thing I hadn’t tried, at that point, so I decided I would. A couple of weeks later I felt amazing. My energy skyrocketed, I wanted to eat everything, the itchiness was gone. I had found the culprit.

Since then, I have not voluntarily consumed any gluten-containing products, and I’ve continued to feel progressively better. Occasionally I’ll get a bout of symptoms, but it’s very rare, so it probably happens when I eat out and the restaurant workers aren’t diligent in preventing cross-contamination when they call something “gluten-free” – or maybe there is something else I react to as well, that I haven’t found yet. I’ve never had a clinical test for CD or gluten sensitivity because all tests require consuming gluten, and I just can’t bring myself to do it voluntarily. Is there a benefit to getting a formal test?

I’m wondering if you’ve dealt with or heard of any cases similar to mine. Any other advice, suggestions, ideas, greatly appreciated.

I had a situation very similar to yours. I was vegetarian for a few years when my symptoms started. I ate a lot of whole grains during this time. I had pretty much constant bloating and fatigue plus what I thought were “random” hives from seasonal allergies. At one point they were so bad they were blistering. I gave up gluten and they never came back.

Thank you for this informative article! After nearly two decades of trying to control Angioedema and 10 years of unbearable symptoms from Hashimoto’s Thyroiditis that couldn’t be suppressed with synthroid and cytomel, my 6th doctor and a good friend recommended a gluten free diet even though I tested negative for celiac. After conducting my own research and finding your page, I jumped in. I am two months in to the GF diet and have been symptom free aside from two Angioedema triggered reactions I’ve had after drinking beer. Hard to believe after 17 years of severe swelling of the body (and I mean severe- needing emergency medical treatment), a multitude of prescriptions, a handful of doctors, injectable steroids, days upon days of missed work, a laundry list of unbearable symptoms associated with low-thyroid function, and thousands of dollars spent, it’s been gluten related all along. I have to wonder if I would have developed the second autoimmune disease (Hashimoto’s) had i been properly diagnosed when I developed the first (Angioedema) at 21 years old. It is truly maddening to think of the experiences I’ve had over the course of my entire adult life that could have been altered by a change in my diet.

I’m now faced with another problem, as my 5 year old son has been battling type 1 diabetes for 3 years. I’d like him to also eat GF, but is it too late for him?? Is the damage done? Did I cause this by eating gluten when I was pregnant? Somewhere in the article it mentions the placenta? Since he is clearly at risk for auto-immune diseases, will continuing to eat gluten increase his chances of developing another? How can I get my husband to buy in? 🙂 he’s a naysayer.

Thank you again- I have found your articles and resources to be of great help throughout this journey. I am eternally grateful!

Dear Jessica, I can empathize with you. I have probably had celiac my entire life, and all doctors told me that I was fine–I had skin problems, PCOS, IBS, fatigue, was underweight etc. My second child developed Type 1 at age 3. She is now 18, and a few years ago when I learned that autoimmune disease and leaky gut are linked I encouraged her to go GF and she has (I went GF ten or so years ago when I started figuring it all out through sites like Chris’s). It’s never too late. A GF diet will not reverse his Type 1 but might prevent the onset of another autoimmune condition in the future. I wish I had had this knowledge all those years ago, also, and gone on a GF/nutrient dense diet before having children. Type 1 is such a burden! All my best wishes to you.

Could gluten be responsible for chronic post nasal drip caused chronic throat clearing? Especially at night when going to bed? I went gluten-free 18 mos ago, and it pretty much stopped, after years of this happening, and I used to eat a lot of bread both at lunch and dinner. I’ve since wondered if it was the texture of the grains irritating my throat, or if it was an internal reaction. Also, I’ve noticed that I get canker sores much less often and when I do get them they heal dramatically more quickly (days vs wks sometimes) — again wasn’t sure if it was the texture or internal. French bread could often be a problem due to the crunchiness and shard like pieces of the crust. (I take lysine in high doses regularly, but always have.). I still rarely get the throat clearing thing, especially if I’ve had a lot of lemon juice or similar in my salad dressing and for some reason it’s irritated my throat that night, but again very rarely. All those years I assumed it was dairy, but I still consume dairy, even at night right before bed sometimes, and no throat clearing. Could it have been a form or sign of NCGS?

Yes, those symptoms can be related to gluten sensitivity. I get sores inside my nose, my inner ear itches non-stop and head congestion to name a few symptoms. When I detox off gluten, my skin feels like it’s on fire. I’ve been tracking my symptoms since going gluten-free (or trying to be gluten-free) so I know my symptoms are related to ingesting gluten. Even though I have no gastrointestinal issues, I definitely need to avoid it.

Tabatha, thanks. My skin is on fire too. But I assumed it was because of the change in my skin condition that caused me to get off of gluten in the first place. I’d never considered that it’s the actual detox of gluten that is causing the heat. It’s been 18 mos since consuming gluten and my skin is still on fire, so I’m not sure that’s the cause for me, but I’m learning that the more I know, the more I realize that anything is possible.

I don’t know why Salicylate sensitivity is not considered in most of these discussions? Could it be an inconvenient truth in the Paleo diet? I am doing really well on Paleo but low SAL. Especially skin conditions, consider salicylates. If the liver enzyme sulfo transferase is not detoxing the salicylates in all these high salicylate Paleo foods they accumulate under the skin. Sweating, e.g Bikram or saunas will help if you are able to take that and rehydrate well. See FedUp.com.au for Salicylate info under Fact Sheets Royal Prince Alfred Allergy Unit, Melbourne Australia has helped thousands of patients with elimination & challenge for Amines (“histamines” in US), Salicylates & Glutamates, as well as all the added & processed food chemicals and usual suspects. Is it that most people just won’t manage elimination & challenge? The question is how to get the process back up to speed if compromised?

Adding my own n=1, I had a similar symptom when I was still consuming gluten, this weird postnasal thing that would half-choke me and wake me up when I was trying to fall asleep. Another thing that would happen is I’d have weird itchy sensations or twitch awake. And that’s when I would get sleepy, because there were many nights I had insomnia, some leading me to stay awake *the entire night*. I think I came very close to bipolar disorder as well. And then there were the GI problems, including reflux and, um, issues lower down, and then there were the migraines.

I get highly irritated when one of my Facebook friends posts a link “debunking” gluten sensitivity/intolerance. I didn’t even get off wheat because I thought it was causing problems–I assumed my issues came from excess carbs. I had hit a weight loss stall and imposed an elimination diet on myself to break the stall. When I reintroduced wheat it was just a plate of noodles, and within half an hour I was sleepy and stupid and still had to drive home. Noticed not long after that even when I ate traces of gluten in sauces, as in the sauces they offer at bd’s Mongolian Grill, I’d still turn into a mental slug within the hour. That scared me. I went gluten-free at that point and have remained so. Several months later I noticed my migraines were gone.

Oh and as a postscript, I still think I have problems caused by excess carbs, I meant to say that I thought certain specific problems were caused by them and turns out it was mostly the wheat doing it. I still have some other issues if I overdo the carbs, like very poor energy in the morning and water retention and, of course, weight gain.

I have been gluten intolerant for over twenty years. I discovered it myself after seeing 2 specialists who did not find cause of my severe pain and body rash. I also discovered that tablets with magnesium stearate in gave me the same symptoms .It is an ante caking agent that is used in most tablets. As I have an underactive thyroid I have to take liquid medicine as there are no tablets free of this ingredient. Could this agent contain gluten. If so, G.I people need to be aware. I notice one company that sells vitamin tablets claim that they are all free of magnesium stearate. It must be a problem for other people for them to be doing this

Thank you for drawing new attention to this very real issue. I spend a few decades dealing with issues now known to be caused by gluten. When my husband and son were diagnosed with CD and our family began the journey of gluten freedom, I began to isolate certain symptoms with having eaten gluten since I was eating it less and less. My intolerance was diagnosed with a chiropractor who practiced Applied Kinesiology. He also determined I am allergic to cow’s milk and MSG. I am forever thankful to him for his wisdom in treating me. This is real and serious.

Thank you for your profound work. I am a very concerned mother of a 12 year old daughter. She is on ADHD medication. Much to my dislike. As the daughter of a homeopath I am very much against medication but my daughter can not concentrate without it. I want her to go glutenfree more than anything. She experiences abdominal pain besides the ADHD symptoms. However my docotor is not open to my concerns and my daughter is not willing to give up on all the foods that she loves. I am afraid that if I force her to change her lifestyle that it will backfire and result in an eating disorder and obsession with ‘forbidden’ foods. I live in the Netherlands and would like to get acces to the Array 3 test for her. This might help het change het mind. To me the relationship is clear between her symptoms and what she eats but I am without proof. How do you recommend I mve forward with this problem? Dutch doctors are known to be very sceptical. There a no holostic doctors in the Amsterdam area where I live. Can I get access to the Cyrex lab as a consumer? Thank you again for your work and I hope that you can respond to my question.

I think that “gluten sensitivity” might be just the tip of the iceberg for what’s ailing you 12 yr old daughter!

Do get a hold of the neurologist Dr. David Permutter’s newest book BRAIN MAKER and read what he says about the very issues you describe and start following – a few at a time – his suggestions!

This should not be that hard in Holland…I’m often in A’dam, since I have family living there. Getting good milk products, like yogurt with life cutures, Kefir, fermented vegetables (that you can also make yourself!) is possible there! And, your daughter might actually like them…her body telling HER that they are good for her health! (Chris’ daughter Sylvie, he told us, likes Sauerkraut!)

You can also make excellent “Smoothies” with yogurt/kefir and fruit! They are really nutricious & tasty and can pitch-in for desert!

To me it sound like your daughter has a basic GUT problem (disturbed intestinal flora, also called: the Microbiome) which can have MANY origins – the book contains a questionaire – that manifest in HER health issues.

I’m 3 weeks into Dr. P’s protocol and my long standing “skin problems, depression, bloated belly, lack of energy and sleep problems” all have cleared up! The book has truly changed my life!

And in Holland, you can order the supplements/nutrients that he recommends from Vitamin Shop, Swansons, etc. (Unlike Germany, it has much easier “shipping regulations”).

I am from the Netherlands too, got the link of exendo.be from a orthomoleculair doctor. You ll find definetely evidence for ADHD and ADD caused by an ezym deficiency! Tests are available as well, also some good orthomoleculair doctors in the Netherlands will be able to test this. Hope this helps! Sigrid

Hi Chris. I’ve been gluten free for 4 years (since my IgG panel showed NCGS) and wheat free for about 7. I feel way better but still have some digestive issues. I was given proton pump inhibitors for years as a kid. After I got off those I had undiagnosed food sensitivities along with leaky gut and copper overload. This led to a parasitic infection which I treated conventionally. I’m slowly on the mend and have the best time following an SCD inspired Paleo lifestyle. I’m 29 and very serious about nutrition and health. I love your website and have gotten my 61 yr old uncle following your plan. My father was a neurosurgeon who passed from ALS in ’99. Who knows, he could have had NCGS. Thank you so much for sharing all your knowledge. I’ve had no luck with conventional MD’s whatsoever. I do hair mineral analysis through Dr. Lawrence Wilson. His articles are nutty but the supplementation and nutritional balancing he provides has really worked when nothing else has.

I work as a research assistant in a lab who studies ALS. ALS is thought to be autoimmune but based on the current research I think at this point we can only guess there might be a connection with CD. The reference that Chris listed above is a case report of a man who had “imaging findings worrisome for ALS.” This is only one case and it wasn’t even a confirmed case of ALS. There might be a connection but right now we don’t have the information to prove that.

I have ME and CPTSD. Undiagnosed IBS but I know it was there ever since illness in India in my late teens. asthma, light activated epilepsy (only one fit ever… But a severe one that flattened me for a year afterwards and I still get headaches in the spot ten years later). I went through nearly four years of intense wrist pain… Never properly diagnosed, but very much like peripheral neuropathy. Acutely painful. I am pretty sure the ibuprofen I took did me no favours. I had tests that identified auto- immune antibodies specific to attacking the thyroid (though my thyroid levels within the normal range- does that mean I am developing Hashimotos?someone told me it does), so I tried going grain freestyler some research as I didn’t want to have no hypothyroidism on top of ME, but had an extremely severe reaction with my CPTSD symptoms flaring up acutely. I was too ill to spot the link, but stopped the bulk of the diet as I could not handle the organisation of it with such severe symptoms plaguing me (it was horrendous… Not sure how I got through that time). I decided to keep with no gluten though (thank goodness). The CPTSD immediately improved when I took up the other grains again (any ideas why that was? I wonder if it was down to die off reactions, and that maybe it would have suited me very well if I had managed to stick it out?) My wrists gradually improved over the next year – I put it down to the acupuncture I started having at the same time, and I know for a fact that really helped as it got worse when I missed an appointment. But a couple of times I had gluten again by mistake and I was really sick the next day…. Terrible upset tummy and fatigue. I also gave up coffee again (third time) to help cope with the anxiety from CPTSD which really helped and knock on effect much better gut functions too. I make milk and water kefir and kombucha too. All producing improvement. I think those improvements made me able to distinguish other problems more clearly… Too much milk clearly has an impact on me. So in the last few weeks I started cutting dairy too… Almost instant improvements in the horrible joint pains and clicking joints that were getting worse and worse. Pains almost gone! Only on very run down nights now. Vast improvement. Bit depressed about that I love cheese! But so so worth it. I am guessing there may be more discoveries yet to come (not too many more I hope or eating t will get very hard and like many others my family give me a very hard time about it) and keep on hoping that I might discover one that would help with the fatigue… I can’t walk far and probably spend a half to a third of my life unable to get out of bed or off the sofa. Though years of adrenalin from CPTSD and a lifetime of poor sleep means I most likely need lots of rest before I can even hope for improvement there. I would love to get that test shown above and wonder if the wrist pain was due to gluten as well… At least I can write and drive and paint again now they have improved! 😀

I know there is something more wrong with my stomach now that I took grains out . It’s like I was feeling a lot better after for about 3 months . Than the bloating and just the icky stomach feeling is coming back . Hard to figure things out ….

What is your probiotic consumption like, just for curious? I still maintain that many or most of our society needs to be taking extra probiotics. Our forefathers thought it was important, and they did not live with chlorinated water or antibiotics, as we do. I find it difficult to eat enough fermented foods, although I love them when I do. But I have to supplement with many more times the recommended daily amount to maintain. I think all of these symptoms and diagnoses go hand in hand with the state of our microbiome.

I have all of the comorbidities (osteoporosis, thyroid disease, autoimmune diseases, and SIBO, for example) of someone with celiac disease but am told I do not have it. I am to the point that I can only eat meat and lettuce…I’m either allergic to everything else or it gives me a headache or chronic sinus infection. I cannot drink coconut water even.

Hi, your blood tests can be normal with CD. I would ask to have the gene test done, if it comes back negative you gave no chance of CD, good way to rule it out. My daughter has so many symptoms and regular blood tests ruled it out. I insisted on the gene test and she had it, they wanted her to have a biopsy but since she hadn’t been eating much at all it could of came back negative. Just took her off all gluten and oats and dairy and she is a healthy 18 yr old. If you don’t have the gene you are probably gluten sensitive

Thank you for your work! One of my daughters had stomach and digestion issues her whole life. Otherwise she was healthy and athletic. By 28 yrs. she was diagnosed with CFS. The “alternative” MD ran thousands of dollars in tests but never anything for celiac. She changed her care to a Naturopathic physician who ran the tests on both of us. I am gluten intolerant and she has celiac and, at that time, a leaky gut, chronic yeast. We are grain free and 7 years later without issues unless we cheat. My back pain,arthritis (much slower), headaches, migraines, hypothroidism (no Hashimoto’s tho) and brain fog are gone. But I can’t tolerate any grains. My daughter still has a limited diet (protein and vegies. Can’t tolerate carbs or sugar (even fruit) and we are thinking her gut microbiome is limited from early antibiotic treatments. Think she could benefit from a fecal transplant…nevertheless, we are very careful about our food and pretty much ignore the snide remarks from some family and friends.

I just read a similar article about a month ago and decided to get myself tested. Still waiting for the actual pyrrole results from urine. BTW Even though I take zinc daily, I was very low in zinc acc. to the blood test. Apparently, not all zinc is created equal. A more absorbable form is needed for those with pyrrole issues. I’m still waiting to hear what that is. I used Direct Health Care Access for the testing. It ran a little over $200 for zinc, copper, histamines in the blood and pyrrole testing in the urine. I am in no way connected with the company.

I just received my test results in an email. I do have high levels of kryptopyrroles in the urine as well as low levels of zinc. Now I need to find a decent naturopath who can help me allow my body to retain zinc and B6.

I just received my test results in an email. I do have high levels of kryptopyrroles in the urine as well as low levels of zinc. Now I need to find a decent naturopath who can help me to retain zinc and B6.

I am thrilled to read this article. Thank you, Chris, for writing it. I was diagnosed with gluten sensitivity by a naturopath using the Cyrex test 3 years ago. And, my results showed reactions to other components of wheat that would have gone undetected by a conventional gluten sensitivity test. I will never know if I have celiac disease because my primary care doctor didn’t recommend a biopsy, which I now know I should have demanded. My diagnosis triggered some family members to be tested. My daughter, mother, and father are also gluten sensitive. This has changed our lives is the most positive of ways. I am a culinary graduate, was a pastry chef and personal chef, and am learning how to cook all over again. We are also dairy-free. If I can do it, anyone can make the lifestyle change. I feel so strongly about sharing our family’s experiences that I started a website, http://www.itcrumbles.com, where I share our symptoms, recipes, and latest research on gluten sensitivity. I learned about gluten sensitivity from a friend and will continue to give back. We learn from others.

The struggle is real! This may seem a little off topic, but I promise, it relates 🙂 Several years ago I was always so tired and had gastro issues, itchy skin, joint pain, major heartburn and headaches. I went to my conventional doctor and she sent me for a thyroid ultrasound and did a (very) minimal blood test. Someone in the office called, gave me my numbers and said the ultrasound revealed “thyroiditis, but you’re fine”. I remember looking up my numbers to compare to a normal TSH and even looking up this vague term of thyroiditis and being so angry at that doctor. I immediately went searching for a professional who I felt would actually care about their patient(s). He is who introduced me to a world of issues, including NCGS, that I didn’t realize were out there! He helped me with candida in the gut and an additional gut bacteria problem. And, while working on that, determined my Hashimoto’s – ugh! With his help and the awesome Paleo community (I’ve definitely struggled with it over time) I’m proud to report that I’ve been GF for a year and AIP Paleo for a few months. I’m still tired a lot, but it’s not near as bad (dang thyroid!). Being GF has helped tremendously with my joint pain, headaches and heartburn (disappeared, like, immediately)! We are still working on that Hashimoto’s, trying to save my thyroid. I get a little bit of grief from a friend or two that may roll their eyes, but they just don’t understand. When I hear their health complaints, I will tell them about researching and possibly doing a 30 day elimination type diet. I love it when I see their face….they refuse to give up the stuff that is most likely causing their issue(s). Can’t help those that refuse to try and help themselves! And, I always hear the complaint about how expensive it is to eat Paleo and GF. Personally, I think it’s no worse than them going out to lunch and dinner almost everyday, but it is what it is. I will do what’s good for my body and they can roll their eyes…lol Some friends are completely on board and super supportive so that’s where I try to focus 🙂 Thanks for the great article, Chris! Helps to make me feel not so alone and it reminds me to keep up the good fight!

Gina. I feel ya. I was also diagnosed with Hyperthyroidism and have not had a re-occurrence of the fatigue, etc. A complex B vitamin (try a raw food supplement) and iron supplements helped tremendously. I also stopped using fluoride toothpaste since this chemical attaches more quickly to the thyroid than iron. (I know this because I read voraciously about this condition for the past two years.) I also started putting magnetic nascent iodine in my water a couple of times a week to stave off the fluoride I had already consumed. It’s a dangerous thing because that poison is in our drinking water. (Get a filter.) I do hope you feel better. Get some sun as well. 🙂

I have not read the comments so I don’t know if this has already been posted. Readrers of this artcile may find it useful to know that the Gibson 2013 research paper is paid for by George Weston Foods. Among other things, this company sells a lot of bread.

Very interesting. I wasn’t aware of that, but I had begun to suspect. It seems like Gibson is out to prove that NCGS is simply FODMAP intolerance. I don’t doubt that this is true in some cases, but it’s certainly not in all. I was wondering what his motivation might be to take such a stance.

I started to experience uncomfortable digestion and GI symptoms about ten years ago now and was persuaded by our chiropractor to get a blood test that tested for a number of food allergies. It came back positive for wheat, barley and hops antibodies (no specifics were given) but not gluten. I started a wheat and gluten free diet from that time and the change was dramatic. I have not looked back. I have been chastised many times for not getting proper celiac testing done before i stopped eating gluten but why go back now and go on it just to prove to a Dr what i already know… I don’t tolerate gluten, wheat etc. In recent times my older sister and my niece (from my other sister) have both been diagnosed as celiac, which further supports my case with a family history.

In the last few years, despite following a gluten free diet, I still had many uncomfortable GI symptoms and have trialled many dietary changes to see what helps… no great and lasting success until I tried the Whole30. What a change!! Since then I have adopted a predominately paleo diet and will not look back. The difference to my symptoms and quality of life is night and day. Food truly is thy medicine.

I have mast cell/pots/eds 3. I was told as a young girl that I had a wheat sensitivity due to an allergy test. I was only told to not eat it every day. Forty years later the mast cell activation took an ugly turn. The recent celiac test showed nothing of course. I tried gluten free for one month despite the negative test. I felt no different. I had a friend laugh at me when I told her I only tried for a month. She has celiac and said she was told it would take almost 6 months to get the proteins out of her system. So I continued on. I am in my 6th month along with going strict grain free for two months and allowing only a few cheats a month. I allowed myself to try a cupcake with all the gluten yesterday. My condition worsened within 24 hours. My joints hurt terribly and woke up with the strange feeling in my head and quite dizzy. It’s also very hot where I live which doesn’t help, but it’s been hot for weeks so I believe it’s the combination with the heat and gluten yesterday. Right now I am getting an IV at the doctor since my system reacts mostly autonomically right off the bat. I am having myoclonic seizures as well. These are basically lil body hiccups. Anyhow, if you Google myoclonic seizures and gluten you will find a large correlation. So yesterday was my first cupcake with all the gluten and my last. 🙁 but there are worse things to have to live without.

i started randomly vomiting which I traced back to wheat and gluten products. I do get looked at and commented on when I avoid it and professionals tend to dismiss it. As I have not been diagnosed, I am not celiac therefore simply restricting an essential food group. I found that I cannot eat dairy or sugar products either. I know it all makes me sick, so I continue to avoid it and am so much better for it!

Yes to all questions. I was diagnosed with fibromyalgia 20 years ago. When a friend suggested I get tested for gluten intolerance, I was skeptical myself, waited a year to get gene-tested. Both my daughter and I carry the gene. Once completely off gluten (and dairy due to the body often mistaking the large molecule for gluten), my widespread fibro pain resolved. I was left with debilitating fatigue, brain fog, constant headaches, irregular heartbeat. I would likely be diagnosed with CFS today. As to those who question, no one can understand someone else’s debility. I’ve learned to accept that. As I’ve always said, I can forgive someone for not understanding but it’s harder to forgive someone for not believing. Even slight jokes can be hurtful. I know a few friends and relatives just think I’ve gone “eccentric.” I can’t do anything about that, or their insensitive comments other than stay away. Life is too short to subject yourself to negativity.

Just remember, ignorance is bliss. I stopped taking it personally, and instead I feel sorry for people who don’t know any better and are insensitive to the needs and comfort of others.

I heard Daniel Amen MD speak a few weeks ago and he talked about how he’s a warrior for his own health and that he gets the same types of comments from friends and family that you mentioned. So even internationally known experts have to deal with some level of lack of support from their “loved ones”.

Probably the hardest concept for some to understand is that for many of us, the 80/20 rule is not an option due to total intolerance, allergy or autoimmunity, etc., or just plain unwanted discomfort. And when those people say, “oh come on, one bite isn’t going to hurt you” they simply do not understand that it actually will.

In response to Claudia, good for you. I’m wondering how long you have been gluten and dairy free. I am almost 2 yrs gluten free, dairy free, and sugar free. I sought the help of a professional. I too had your same symptoms. My pain levels have gone from an avg 6-8 down to a 0-2. You may want to consider going sugar free as well. Sugar, like dairy and gluten are inflammatory, which may be why you still have your lingering issues. It also takes time. Some longer than others. My issues resolved slowly, but I stuck with it. Good luck.

Very interested in your cfs diagnosis – has going gluten free helped with that? Am just starting to put my teen daughter on the road of gluten free eating – she has found the info to this thought herself – she has a constant migraine headache since a tonsillitis attack in Feb,- followed by complete fatigue.Being able to manage a shower is a blessing – which is sometimes just not possible due to her absolute fatigue. Collage – and life is on hold for her now. We started the gluten free way of life with her supper this evening – so hopeful for good results and the possibility through faith that her life will be returned! x

I think I definitely have a food intolerance but I cannot seem to find out what it is, I think it may well be gluten. I’m on a FODMAP diet and things are a bit better but not totally. I was absolutely fine prior to 2011 then all of a sudden had lots of tummy symptoms, hospital admissions due to severe pain. I’ve also lost weight since then. The Drs said I had IBS because they couldn’t find anything. I would love to know what it is that I’m intolerant to so my life can go back to normal. Is there anywhere in Scotland or UK that does the specific protein testing that you mentioned? Thanks.

My 10 year old daughter has had eczema her entire life, along with food and environmental allergies. I’ve read your book and the bonus chapter on skin and it seems like a low-histamine diet and supplements might be something good for us to try. My question is: do you still recommend the same supplements for a child as you would an adult or are there other considerations I should factor in? Thanks.

I too am self diagnosed with dairy intolerance also. Have suffered IBS for decades, then more recently diagnosed with hashi and fibromyalgia. My gp says I’m not gluten intolerant as tests came back negative but I know all my symptoms improve when I am gluten and dairy free (sadly don’t go completely). Thank you so much for your article – it gives me the information I need to continue despite my specialist saying I needn’t limit my diet – I often end up thinking I must be deranged and start to eat bread etc again only to feel dramatically worse and start the rollercoaster all over again! I will sti ck with it this time

When I learned I had celiac disease I had my 3 kids tested for gluten intolerance — I believe it was a genetic test to show predisposition to gluten intolerance or celiac disease. Because those tests came back negative, my two teen daughters think it’s OK to eat gluten in spite of both having experienced eczema and psoriasis, and one having experienced alopecia areata. When skin problems are not active my daughters think the problem has gone away, but I fear the autoimmune process has simply moved elsewhere in the body. Fortunately my son discovered that he feels better without gluten so he avoids it completely. I wish I had known about the Cyrex test a few years ago. Can any practitioner offer the Cyrex Array 3?

i am gluten intolerant. i have yet to have the cyrex tests run for it and the associated foods. i know i am because of an elimination diet. i had been having swelling from my knees to my feet. it was uncomfortable, like a sunburn. i had pain in my feet that i thought was plantar’s fasciitis. i had numerous other symptoms too! then i did gaps diet. my swelling went away. i went on to just a sensible meat and vegetable diet and everything seemed fine. lost track of it because i was feeling better. then i had pizza from a special restaurant that makes all their own sausage etc, really nice place for pizza. that evening my right ankle and foot swelled up. next day my calf was too. maybe on the left side but the right side is VERY noticeable. i have since tested it a few times. i cannot eat wheat. i believe almost everyone i know has a sensitivity to wheat and/or grains!

Having suffered with depression for years and in the last year or so having chronic farigue I went to my Dr who did every ‘normal ‘ blood test ..found nothing except low cortisol so referred me to an endocrinologist. more blood tests still no amswer. By this time I was so exhausted and at my wits end my ears pricked ip when a coeliac friend of mine said pre diagnosis how he had similar symtpoms . So .. I stopped the gluten .. within three days I felt SO much better .. energy.. no chronic tiredness by lunchtime .. and over 6-7 weeks lost 1.5 stone ! so on my return to the gp ?? his comment was that it was complete coincidence and to return to him in a month or so as he felt sure my symptoms would return .. they didnt and neither did I bother returning to see him !!

I thought I was allergic to cow´s milk for 30 years. Them my sister started keeping goats, and phoned me and said that all her symptoms had gone. My mother and I tried and our symptoms vanished. (sinusitis, nasal polyps, autoimmune problems, asthma attacks) We cannot tolerate cow`s milk, but goats and sheeps products are fine. I found out the explanation recently, they have a different kind of casein – beta casein A2, not A1. It may not be necessary for people to give up dairy. Only those who are lactose intolerant – which could be a miss diagnosis for casein A1 problems. See the following sites:- 1)http://articles.mercola.com/sites/articles/archive/2009/07/09/the-devil-in-the-milk.aspx 2)http://www.naturalnews.com/033384_A1_beta_casein_milk.html#

I have been gluten free since 1992. In 1991 I decided I would try a vegetarian diet and for 6 mo. I ate so much wheat. I was living in P.R. at the time and I did not know about other grains. By the time I left P.R. at the end of 1991 I had so much cystic acne and constipation. When I got back to the states I went to see a dermatologist who wanted to put me on antibiotics for 6 weeks. I said ,”No thank you”, and I went to a health food store. The woman there took me off of several foods and my skin was clean in a month! When she re-introduced wheat that is when the acne and constipation came back. Other symptoms that I get if I eat gluten( accidentally )are brain fog , tiredness , irritability and maybe sensitivity to sound. My mother in law has also noticed the whites of my eyes get yellowish. if I sleep 10-12 hrs. I know I have probably consumed gluten somewhere, usually a restaurant. Is there any research linking gluten intolerance and Alzheimers?

Can gluten intolerances cause malabsorption of fat? Long story short, I have had abdominal pain, cramping, tenderness for almost a year. I’ve had every test know to the GI world (including gluten testing- negative, an mrcp and EUS to look at the pancreas and biliary system, an EGD, tuns of bloodwork and stool testing. The only thing that has come back abnormal was a 72 hour fecal fat test which showed mild malabsorption of 9g/day). My GI said that celiac causes malabsorption but not gluten sensitivity (and not to mention he does not believe in gluten sensitivity). Should I cut out gluten to see if it helps? Maybe i need digestive enzymes? Help!?

I had a lifetime of health problems since birth including infrequent seizures, recurrent tonsillitis, UTI’s, anxiety and depression, near constant constipation. In my early 30s I began getting chronic sinusitis and vertigo. In a few years I began getting strange autoimmune symptoms and losing the ability to find nouns and my doctor said we would wait and see if it was MS. Quite by accident, I went on a low carb diet and for the first 10 days cut out all non-veg carb and dairy. I could breathe clearly for the first time in years. I felt such relief. I think I was on a quick downhill slide that I was able to slow down. No one had ever suggested to me that what I was eating made any difference. I was always called a “health food” eater and ate organic and lots of veggies, but it wasn’t enough. Very grateful for your articles and all the stories in the comments. It helps me to navigate my way back to health.

Thanks so much for this article. I really hope your call for a higher profile journalist to take this on is met. The community of folks that are gluten intolerant need your support as the world does indeed seem more hostile/disbelieving of us and it’s at the risk of our health when so many cynics are in the food preparation business.

I have been unknowingly exposed so many times that I’m at a point where I’m not comfortable eating something anyone else prepares, because recovery is just too slow. My symptoms are largely brain-related and I can’t handle the days of brain-fog, fatigue, insomnia and constipation that follow gluten exposure. I have sub-clinical Hashimotos Disease, so if I can support my system and avoid the food triggers I may be able to avoid a lifelong dependence on drugs.

Thank you for the article. I was diagnosed in 2010 with Anemia. In November of 2014 I was diagnosed with Mixed Connective Tissue Disease and since have been diagnosed with Rheumatoid Arthritis, Hoshimotos and hypothyroidism. After several Dr’s and not a lot of relief, I turned to friends and family for insight. To my surprise a few of my Facebook “friends” had similar or the same autoimmune disorders. They ALL found that they felt better and some even are completely off of medication being gluten free. It’s been very challenging for me. I’m Italian and LOVE bread and pasta. I definitely see and feel a difference for me since going GF though and am on my way to getting my life back. Thanks for info 🙂

Unfortunately, yes. But I am working on it from another angle, which is starting a training program in functional medicine for doctors and other health care providers to educate them on topics like this. There are already similar programs and hopefully in time we can turn the tide.

Great article, Chris! I had my own experience with this as a patient before I became a health advocate for others. I’ve been gluten free for 5 years now (along with other eliminations) and it’s been one of the main factors that returned my health after 16 years of illness!

I am food-stamp poor due to crushing chronic conditions over the past 15 years. I have done my best to follow paleo/ancesteral/funtional medicine approaches, but FM is not accessible for the 47% that don’t have great insurance or disposable income, and Pyrex is crazy expensive. So my question is what are the bare-bones tests I could try to get? Array 3? I have done elimination diets, SCD, AIP, SIBO/SIYO….

It’s great to share a cost saving tip – less great to chide someone who sounds like they are in distress. We don’t know their situation. Or maybe it was not intended how it sounded. But yeah – thrift stores, Salvation Army, plenty of places to find cheaper safer food containers.

I believe it was a typo & the writer meant Cyrex. And btw your post is extremely insensitive and mean. I, too, am struggling financially due to over 20 years of chronic health problems & autoimmune diseases & working 3 jobs just to keep a roof over my head, a reliable car to be able to go to work & food on the table. I’m exhausted, & have sunk a lot of money into conventional medicine over the years with no relief & try my best to follow the autoimmune protocol, though just can’t 100%. I was taken for over $100.00 I paid in desperation by a functional medicine doc who promised to create a treatment protocol for me but reneged on that, instead only meeting with me for a 30 minute consult in which I provided a history. It was money I really didn’t have but agreed to pay because I am in dire straits & in need of help. He told me my treatment overall costs would be over $7,000.00. People are “food-stamp” poor who need help but I don’t see anyone in the functional medicine or the Paleo community stepping up to help suffering people. I read and research constantly, but that only goes so far. I can’t get well enough to sustain working full-time much less 3 jobs & after getting better initially, have worsened again. What I do see are a lot of “buy this” & “spend your money on this” requests though; a lot of selling. A non-profit would be a good idea for the Paleo & functional medicine community to establish. We are in need & the conventional medical community treats us as if we’re crazy & provide little to no help. In spite of my compromised memory & brain-fog, I do have some useful business talents, one of which is my 3rd job & I have reached out to some in the Paleo community to barter my business services to be able to obtain knowledge materials or products & have been met with virtual crickets. A little compassion by commenters as well as the Paleo community would be nice for those of us severely beat up for decades by the medical community, friends and family.

Hi Chris, I self-dx’d after reading Wheat Belly, lost 25lbs and felt great for about 3 years. Started with stomach issues again so cut out dairy for the last 4 weeks. Feeling much better and noticed lower back pain that I’ve had for my whole adult life is very much improved! (Didn’t expect that!) Sad to hear coffee and chocolate could be causing problems too, but if it helps, I’ll also give them up.

I feel my Mom had gluten sensitivity all her life. She was dx’d with Waldenstrom’s Macroglobulinemia when she was 60yo, eventually died from it 13 yrs later. There is research now possibly linking the two.

Some support from family, but they are still skeptical. I know how my body feels and I will never go back to eating gluten ( and now dairy too). Thank you for sharing all your wonderful knowledge and research!

I am self-diagnosed. I suspected it for a long time, and after reading Wheat Belly, I successfully went off gluten. The bloating and stomachaches were gone, 4 pounds melted away, and cravings for breads and pastries diminished considerably. I tell people who ask that wheat and gluten seem to drive carb cravings for me. I have relapsed briefly or tested myself on a very few occasions, and ensuing symptoms always reconfirmed that gluten and wheat are not for me. It hasn’t seemed to bother anybody in my life and I haven’t taken grief for it. I don’t eat GF bread products very often, though I do cook occasionally with my own homemade GF flour blend, but commercial GF products are way too sugary and starchy for me, not to mention expensive.

I am a nurse & have done lots of reading on this. First, I have hypothyroidism not very responsive to meds & my physician has been adjusting my dose every 6 months for the last 3 years with still poor blood levels. I’m self diagnosed based on the reading I’ve done as intolerant related to my gut issues, appendicitis attack & skin issues. Going GF has cleared up my skin & helped me reduce my acid reflex med from daily to every 3-4 days. I fit all 3 of your reasons above. My daughter had similar issues including the appendicitis attack, but she is not hypothyroid yet. Talking her into going GF has cleared her up as well. I’m hoping she can avoid the hypothyroidism. Time will tell.

Thank you, Chris, for all your work and shedding much light on the truth of NCGI.I went gluten free about 3 years ago as I had a lot of GI tract discomforts, painful gas and boating especially. I also, around the same time, was developing strange symptoms like weakness, joint pain, brain fog, numbness in my limbs, and more. After pursuing answers, I was diagnosed with the autoimmune disorder called Undifferentiated Connective Tissue Disease, which I have been managing via a grain free diet (I also eliminated dairy for at least 2 months to conclude that the occasional piece of grass-fed cheese doesn’t seem to bother me). The huge bonus to going grain-free is that I’ve finally weaned myself completely off of the 2 antidepressants I had been on for 12 years! Grain Brain by David Perlmutter is a great book. I’m an aspiring nutritionist so I routinely geek out on the mechanisms of food intolerances. I have definitely been challenged by friends and family, and get the occasional eye roll from some people. On Facebook, I’ve been know to refer to your articles, as well as those of some of the other leaders in functional medicine, to respond to challenges in this. It’s as if the topic of gluten is right up there with politics and religion! 🙂

I discovered I couldn’t eat gluten when I first started to go into menopause. I had been tested for gluten allergies before and always came up negative. As I started menopause, I started waking up in the middle of the night with an elevated pulse. Dead sleep, wake up in a sweat and pulse would be 120 bpm. This was very, very frightening. Cardiologist ruled out any heart issues — my dad has Wolff-Parkinson-White syndrome and that test came negative. I was told there was no connection between my menopause (and defintely not any food sensitivities) and my cardiac symptoms by both my cardiologist and my GYN. I started to self-diagnose because I wanted to know if there were other factors that set me off and I discovered that alcohol was a trigger as well as gluten. If I had a bowl of regular pasta for dinner at night I would wake up with a racing pulse. Did a food diary and kept track of what I ate and as I decreased my wheat intake and stopped drinking alcohol my symptoms improved. Now, several years later, while I don’t have as severe of a reaction, a day or two of sliding and eating wheat will still result in an elevated pulse and anxiety. Did the Reset for 45 days and felt brilliant. Backslid into old habits and now it’s time to do another reset. Thanks for all you do.

Interesting to hear a somewhat similar story! I became allergic to wheat, barley, rye and oats (even so-called gluten free brands) around menopause. I clearly recall the day when gluten became a suspect. I had been fine all day, during a class break (was in a TCM master’s program), I picked up a banana muffin, ate half as class re-started and was suddenly flushing red and hot with profuse sweating. The answer to my (internal) question, “what just happened?” was–the muffin. Over time, I discovered it wasn’t just wheat, but also the other gluten grains, oats, and even some millet and other grains. I still don’t know why I became allergic, but once I listened to my body, my hot flashes and night sweats went away except for times when I am inadvertently glutened. It turns out that I am hypersensitive to very minute amounts.

The reset as in reference to the juicing movie? I can’t remember the name of it. No food at all but for fresh juice for days at a time. I eat very little sugar, and am beginning to wonder if there is a connection between that and some bouts of extreme fatigue.

Does the Cyrrex lab require you to have consumed gluten in the recent past before taking it? I believe my conventional doctors have mentioned that even if someone removed gluten on their own and felt better for it, if they want to be tested, they have to add it back in for a month or so before the test.

I have found that I am intolerant to most starches. My symptoms included constipation and gas, pain. Fuzzy headed thinking and excessive sleepiness. Depression. Inability to make decisions. I have fibromyalgia and Myofascial pain syndrome with multiple tripper points. Weirdly most of my symptoms occur when my belly flares too. I have been on varying degrees of a ketogenic or Atkins diet since December and have noticed that my mind is clear and my belly feels reasonably well only when I follow this type of diet. If I eat certain foods(corn I think) I will have what looks like a rosacea flare on my face. I am currently on 10 days of xifaxan now to see if some of my symptoms are related to bacterial overgrowth. I did a test cheat meal and only had one hive spot come up on my face. I didn’t go home and pass out after the meal as per my norm, although I felt fuzzy headed and irritable. I put on 3 pounds of fluid over the next 3 days. I am not sure if that was coincidental. My doctor wants me to take the test to see if I have celiac but I don’t want to go off my Atkins to do it, nor risk the side effects.

There are no wheat products that are gluten-free. Wheat contains gluten in its protein structure. There are grain products that are wheat and/or gluten-free. These would not be expected to trigger antibody production to any of the proteins on the Cyrex panel.

I’m gluten intolerant. Don’t know if I have celiac, though. My doctor didn’t know much about celiac, so originally she just suggested a gluten-free and dairy-free diet, because I was sick for a long time and she couldn’t figure out what’s wrong with me. The diet helped, then I tried to reintroduce gluten and dairy separately. I didn’t react to dairy at all, but reacted really badly to gluten, so I’m gluten free since then and my health improved soooo much. Sometimes I get glutened accidentally and it makes me really sick, so I don’t want to do a gluten challenge in order to test for celiac properly, it’s just not worth for me to suffer so much for an official diagnosis, if the only treatment is gluten free diet anyway.

Several years ago I started having severe joint pain to the point where it was painful to walk. I also got hives when I ate gluten but not every time. I slowly realized that it was gluten causing these symptoms and about a month after I stopped eating it, it didn’t hurt to walk or exercise and I felt like I could walk for miles and miles. I had no joint pain, just a fluidity throughout my whole body I thought I’d never experience again. It felt like a miracle. Now I eat a ketogenic diet similar to the Wahl’s Protocol and after about a month, the rest of my joint pain cleared up. I didn’t even realize it was still there until it wasn’t.

I also have so much energy. My ADHD symptoms have shifted a lot and my mood is much more stable. I am so grateful I figured all this out now!

Kris, thank you so much for the work that you do! I am self-diagnosed gluten intolerant at the suggestion of my physician. During a teeth cleaning, the hygienist noticed a condition she called Lichan Planis. I mention this to my doctor and he suggested I try eliminating gluten without even looking inside my mouth. I was a little skeptical to say the very least. But after a few months I no longer had eczema or the chronic constipation that had plagued me for years! I was a convert and went off gluten again immediately. It hasn’t helped with the Lichan Planis 100% but has explained so many of the other autoimmune disorders that I have also self diagnosed thru the information that you share in your emails. I am currently struggling with a gluten contamination and will be really thankful when I right myself again. I agree whole heartedly with your comment about substitution, foe me most are dissappointing. I do want to give kudos to Trader Joe’s! They have a lot of tasty gluten free products and are not gouging customers like some others. Please keep up your very informative work.

Paradise and The Garden of Eden existed here on earth before our fall from grace, the advent of agriculture, Wheat, The forbidden fruit. Did you really believe that it was an apple?

17 And unto Adam he said, Because thou hast hearkened unto the voice of thy wife, and hast eaten of the tree, of which I commanded thee, saying, Thou shalt not eat of it: cursed is the ground for thy sake; in sorrow shalt thou eat of it all the days of thy life;

18 Thorns also and thistles shall it bring forth to thee; and thou shalt eat the herb of the field;

This is a great article, thank you. Most people are entirely unaware of any of the science/research into gluten, or the mechanisms that are being discovered that are beginning to explain the pathways of the problems, and why it is so difficult to diagnose. They’re just proud to know the word “Nocebo”, which is their pseudo-intellectual way to call GF people “idiots” without understanding anything.

My favorite hypotheses for why gliadin causes problems: gliadin fragments not only resemble transglutiminase (TG) enzymes, but supplant TG action by folding proteins into fibers (amyloids). This leaves excess TG in the system, along with amyloid fibers that cause inflammation, and can collect anywhere in the body and cause further damage.

In some people, the adaptive immune system reacts to either the gliadin fragments, or the excess TG remnants; which is now generally recognized as Celiac’s, but is now also linked to many T1 Diabetes cases. In most people, there is no adaptive immune response – just chronic inflammation, disruption of the natural TG rebuilding processes, and build-up of waste amyloids as plaques, which is why gluten has been linked to so many chronic and age-related illnesses, like arthritis, atherosclerosis, T2 diabetes, Alzheimer’s, Parkinsons, etc…

All this theory needs for full confirmation is demonstration that the different gliadin-peptide fragments that result from digestion also produce amyloids in-vivo, as it has already been demonstrated ex-vivo. Fasano’s studies have already described the pathway of how gliadin fragment macromolecules can pass through the intestinal membrane, which otherwise shouldn’t be.

Whether anyone’s actually researching this aspect or not, I have no idea. Probably not. Then NCGS would be real.

Chris, I’ve been sensitive to gluten for about 15 years now and am technically “allergic” to casein in milk-I have problems drinking a major brand of organic milk that has pictures of Holstein black and white (A1 type) cows on the carton… BUT I seem to be able to drink raw Jersey(A2 type) milk. I’ll admit that I mostly drink the raw milk fermented, either with Kefir or Filmjolk yogurt cultures (both mesophilic), so am I fooling myself, or do you have a comment about this?

Thank you much for this wonderful article. I wish I knew about the right way to test for gluten intolerance long ago. I found out in a off-hand way that I was gluten intolerant when my GI doctor asked me to go ahead and try a fully gluten free diet even though blood tests were not conclusive that I had celiac. I was experiencing tremendous pain in my stomach and the GI doctor thought it may be gallbladder issues but all tests were negative for that. The GF diet didn’t help much with the stomach pain. I did notice that when I ate GF oatmeal that I didn’t get a stomach ache and IBS like symptoms like I did with regular oatmeal. Eventually the GI doctor had me do a pill camera test and it revealed I had lots of small ulcers near the opening of the small intestines. The medicine usually prescribed for them made me feel worse. The doctor didn’t know how I could eat for that until the ulcers healed. After much searching on the Internet I found a doctor’s blog dictating out a diet to follow until the ulcers heal: no red meat, no fresh raw vegetables or salad greens and no dairy but make sure to eat cooked vegetables and take probiotics were some of his recommendations. The red meat made sense as I had already told the GI that I would experience severe pain within 5 mins of eating red meat. After reading the blog I paid attention about the raw food and that was the case as well but I never put two and two together because it took up to an hour to experience the same pain. A friend who has been in natural health circles for a while recommended taking l-glutamine to heal the small intestine ulcers. It feels like that is starting to help. He recommended a good probiotic too. Later I met an acupuncturist who said I needed a good probiotic with an enteric coating so that the probiotic made it past the stomach acid in the large intestines and get to the small intestines. I found Thorne Labs FloraMend. The acupuncturist recommended a glutamine gel as the skin could absorb it diectly where needed most. I haven’t found any though. That doctor’s blog also indicated that low vit d and k levels always point to small intestine ulcers. That was on my blood tests many months earlier but my regular doctor and the GI doctor didn’t know. I stayed GF and dairy free nonetheless because I felt better in my large intestines. One evening I thought I could partake in a bit of wheat for a special Polish Christmas tradition. Within 15 mins I was in extremely painful mid lower back spasms and then the pain spread to the whole back, arms, and legs within a half hour to the point I could not lift myself up off a chair or even walk without great difficulty and slowness, which also lasted for a few days. When family, friends, and work and church colleagues ask whether just a wee bit won’t hurt or bother me I tell them yes it will and most of the time I don’t miss any of the wheat and gluten stuff because frankly it just isn’t worth the amount of pain. I’ll even go without food if there is no gluten free even despite extreme hunger. I noticed after 3 months GF what I thought were 3 day hormonal migraines all but almost disappeared…so grateful not to have the 3 day ones anymore! Another GI years ago tried to say it was just a FODMAPS issue because testing showed fructose intolerance, but the diet for that was a joke and even said to eat bleached flour products! I went to my chiropractor for allergy elimination treatments and most of the fructose intolerance was greatly reduced. Since going fully GF almost 3 years ago I haven’t lost any weight and instead have gained. I was losing weight eating raw foods, but the small intestines aren’t totally healed yet, even though I can have a little bit of raw salad the size of my palm without tooth problem. I have noticed some IBS issues with some kinds of dairy even if I take enzymes and specifically lactase. I will be paying more attention to casein after reading your article. Thank you once again!

I suspected a gluten intolerance and sought out a chiropractor in my area who ran this exact Cyrex test in my and my husband. We are both people that probably would have been missed by the conventional testing. Bring gluten free for over a year now has drastically changed our health in every way and we are glad that we now have our children live this lifestyle as well. Hopefully they will live very long and happy gluten free lives!!!!

I am gluten intolerant, in fact, all grains. I honestly have just as much of a problem with corn as with wheat. I had the standard celiac blood test and it was negative, but I very definitely have issues that are fixed by eating a primal type diet. The most frustrating thing for me is that I have family members who I STRONGLY suspect have gluten intolerance but once they have that negative test they close their minds. Same with the doctors. I suffered with horrible chest and stomach pains for years until I just figured it out myself through research and trial and error. I visited many doctors to no avail

I discovered I was sensitive to grains and sugar just over two years ago. I discovered an insulin resistance test online and have been grain-free and sugar-fee since. In the beginning I received a lot of questions about why and how I could cut grains. But now I am down 150 pounds from 310 pounds. I am still tweaking things. I thought most of my issues were resolved but recently found out I have Hashimotos so now I need to cut more foods to see if I can find out the cause. Thanks for the article!

I first developed digestive problems when I went through menopause. I saw numerous doctors who all said I had GERD and gave me megadoses of PPIs. For 10 years I felt lousy. Two years ago my symptoms were unbearable. At a friend’s suggestion, I went gluten free. Within 3 days I felt better and within a week I felt like a new person. No more explosive headaches or night sweats or sour taste in my mouth. I was misdiagnosed for 10 years. I have been gluten free for 2 years and feel great. I also realized that I am lactose intolerant although I can eat low-fat and non-fat dairy products without repercussions. I don’t care if my doctors are skeptical because I don’t have celiac disease. They were all wrong when it came to figuring out what was wrong with me. Not a single one was able to think out of the box. The hell with them.

You cannot know how timely this article is! My gluten sensitivity started in 2008, but I had no idea why my stomach would bloat up like I was 8 months pregnant before I even finished eating! Doctor did a colonoscopy and gave me a clean bill of health, but no explanation. It wasn’t until a visit to a naturopath in 2011 that blood work was done and she explained to me my intolerance to gluten. Two weeks ago I had blood work and found that my cholesterol was in the high range, so I decided to leave off dairy and to my great surprise, my bloating was less of an issue! Today I found this article and I see that the 2 intolerances often go hand in hand! Yea for the internet and intelligent people who post worthy articles! Thank you so much Chris. I don’t feel so alone and finally know its not “just me”. Hope continuing to leave off dairy will help my lack of motivation/depressive feelings.

When I decided to go paleo I got some interesting reactions from family members, especially my elderly Italian father!

“What.. you’ve given pasta and bread?!”

Making this change whilst living in the same house with my parents (where people sit down everyday and have meals together) has not been easy on a socio cultural level. However, I have persisted and am glad for it.

G’day, I discovered my intolerance when a rash appeared on my body, it looked like I had been doused in hot water. Went to my Doctor who wrote a word on my arm with the back of a pencil. Then we waited…wow, the words raised on my arm it was kind of cool but scary all at once. He had known about my tummy problems for a while. At his suggestion I cut out all gluten in my diet and have for the past 5 years been GF. He did suggest I get tested for CD as his thoughts that my ‘funny tummy’ (as my mum has always called it ) has been CD all of my life.

Unfortunately, having moved to a different state my new doctor isn’t really interested in testing for CD. My nausea has kicked up again recently as I’m currently visiting family and they eat wheat, “cross contamination anyone”?

I would love to get tested, I know I would have to consume gluten again and that scares me. Finding a doctor who believes in it is also an issue.

I live with the judgement and rolling eyes of waiters when eating out. When out at one restaurant I asked for GF got serves a meal with bread on the side…sent it back…waited and got my meal. Then it started, the pain, the rush to the bathroom. Found out the waiter had merely removed the bread from my plate. He just thought I was one of those “fad diet nuts”.

This hits close to home for our family! In 2013 our six year old son was diagnosed with Absence seizures, a form of epilepsy. His seizures looked like he was “spacing out”. He was having 5-6 an hour and each seizure was 15-20 seconds, during which he was completely mentally gone but could still walk. I asked his neurologist if this could be due to an allergy he told me that frankly he didn’t care what caused them. Just give our son the meds he prescribed to make the seizures stop. Of course the meds had a page front and back of side effects including Lupus and depression and medical anorexia or loss of appetite. For safety we had to put our son on the lowest dose possible. He still had breakthrough seizures but they were shorter and less frequent. At home I feed him a mostly gluten free diet and made sure he had lots of healthy fats but we were not at 100% all the time. After being on the meds a year the neurologist was almost ready to label him “failure to thrive” (a common side effect of the meds) because he had grown so little. At that time we went on the hunt for a doctor who would listen to us and work with us to give our son what he really needed. When we found the right one we immediately had him tested. He was allergic to Gluten and had food sensitivities to 34 other foods! We immediately went on a paleo diet and eliminated every food he sad struggles with. And within a day all breakthrough seizures stopped. His headaches stopped. His bathroom struggles stopped. His speech cleared up. His teeth even straighten up. He homeschools and even his concentration improved. It has been 8 months since the diet change and our son has grown enormously. So much so that the dosage of his meds should have needed to be increased at least once but they have never been adjusted. We are actually getting ready to wean him off of them. When we last saw the neurologist he asked if we made any changes at home and I gave him the full run down. He listened and then said that’s nice. But wasn’t dismissive. Hopefully this will be helpful for future patients of his. But our family will be paleo forever. We have five boys ages 13yrs down to 3 and have seen the benefits for all of us. Thanks to Chris and others like him and the Paleo community for all the help you have offered!

I discovered I was gluten intolerant about 8 years ago. I was self-diagnosed, as I found that I no longer had stomach pains, gas, bloating & swelling in my face & arms after I cut gluten out of my diet. I am also lactose & casein intolerant (as well as corn, potato, and tapioca intolerant). I’ve never had myself tested at a hospital. Relief of symptoms was a good enough reason for me to go gluten free.

As for my friends’ response to my going gluten free, I would say they were more curious than skeptical/critical. They genuinely wanted to know why I decided to go gluten free, so I calmly explained to them that I always felt sick growing up and never knew what it felt like to feel good after eating. So, while cakes, cookies & pizza are nice, I’d rather eat foods that make me feel good rather than sick. When I put it that way, there was really nothing else they could say against it, unless they wanted me to be sick, in which case, they aren’t real friends, now are they? (Btw, this explanation helped even the most critical & judgmental people understand. I’d say it worked on pretty much everyone I’ve encountered so far.) On top of that, I think my friends just saw how much more energetic & happy I became after going gluten free, so they couldn’t criticize me anymore after that.

In terms of my family, they accepted me going gluten free 100%! They saw how much I was suffering & were all for trying anything that would help me feel better. In fact, my mom found that the painful inflamation in her knees (that was preventing her from walking) went away after she went gluten free! So she’s definitely on board!

I figured out I have a gluten intolerance after doing a 30 day candida cleanse. For nearly 20 years I had hormonally inflamed & bleeding gums after suffering an initial oral herpes outbreak. I asked my dentists and doctors what might be causing it, no one had an answer, and pretty much gave up on a solution. I had a periodontist tell me I was going to need grafts & gum surgery from the deep pocketing. Then, just like magic during the cleanse, the inflammation disappeared. I googled “inflamed gums gluten” and voila, all this information of gluten intolerance popped up. Now if I do have gluten occasionally, I wake up with inflamed gums. My 4 year old daughter was allergy tested and it turns out she has a wheat sensitivity as well.

Based on self experimentation with my diet I determined that I am both dairy and gluten intolerant. This allowed me to get off of medicine that I have been taking for the last 12 years for severe arthritis. Most people seem very confused by what I am able to eat and get frustrated with my diet – especially my family. And my rheumatologist was really annoyed that I was not following his medication protocol and did not believe that my diet was what allowed me to get off of the heavy medication I was taking. However the changes and challenges are all worth it. My future is bright! I am free of the burden of taking medication with many side-effects and I no longer have digestive and joint pain to hold me back!

i put myself on a gluten free diet almost 5 years ago despite a negative test result for celiac. My dr did find that I have the gene for celiac and suggested that my children be tested. At the time of my negative test result I had inflammation of my esophagus and stomach, bloating, gasiness, stomach pains, constipation. All of these cleared up by following a strict gf diet. I find myself wishing I did have celiac to make my diet choice understood. I actually lie when I go out to dinner and say I have celiac to get my issue taken seriously. I know within hours if I have accidentally been glutened. The stomach pains can be severe! I did show a wheat allergy during an allergy test forty years ago.

was tested for celiac and apparently I’m not. still having problems, stomach pain, bloating, bad stomach cramps, etc. etc. Was diagnosed years ago with IBS. Having another scope to see if anything is going on. Fed up living like this, trying to work. It’s so hard lately. Talked to Nurse Practitioner and asked if maybe I was gluten intolerant. She told me to add more fibre and cut out all wheat. still problems.

You may wish to check ALL your food and drinks, snacks, salad dressing, etc.etc.etc..there is hidden gluten in so many things. You can google so many things to see what’s actually in them. Also I gave up liquid dairy and it’s made a huge difference with my symptoms/bloating. Best wishes. This is a great website: http://celiac.org/live-gluten-free/glutenfreediet/sources-of-gluten/

I was diagnosed with Celiac Disease over 32 years ago after 7 long years of feeling desperately ill. There was very little information then, no support groups, and even rice flour was not easy to locate. Few people knew what the word “gluten” meant. I am very alarmed by the epidemic proportions now! I am also alarmed by the casual attitudes of those who believe they are not afflicted and therefore have little compassion for our “fad diets” and our “imagined complaints.”

If you have time to comment on this – – I sent my step-dad, a Family doctor your article, and he said the following:

“I am more in agreement with the linked Time mag article which does not exaggerate the problem. The author of 3 reasons is basing his argument on a few cases he has seen that do have NCGS and a study from Iran involving just over 100 people.”

I know it can be time consuming to comment on each of these, but it makes me crazy his old school approach to medicine!

People often believe what they want to believe, seek out the evidence to confirm that belief, and ignore any evidence that contradicts it. This is called confirmation bias.

My argument is clearly laid out in the article, and it is supported by not one, but 21 peer-reviewed studies I referenced. 1) Current tests for NCGS only screen for a fraction of the antibodies that characterize the condition. 2) Therefore, a large number of people are not correctly diagnosed. 3) Since studies that estimate prevalence of NCGS rely on the inaccurate/incomplete tests, it is virtually certain that NCGS is far more common than acknowledged.

He has not presented evidence to refute this argument. He simply mentions that he is “in agreement with the Time magazine article”. I don’t mean to pick on your step-father; this type of response is common from people that are not really open to challenging their belief.

I have also published several other articles on this topic, all of them with multiple references:

Thanks for this article. I self-diagnosed my gluten intolerance. It’s a delayed reaction for me, but makes me feel absolutely miserable. Thankfully, I’ve never felt any negative reactions from friends or family. It is sometimes incredibly difficult to stick with my very restrictive diet (I’m also super-intolerant to dairy), especially since I’m the only person in my house with these restrictions. But beyond that frustration is the total bafflement as to why gluten-free, and for that matter allergy-free, foods costs so much more than the non-gluten free food; feels like highway robbery!

Because it takes way more effort to make an acceptable cookie without gluten then it does with. Also, the ingredients are more expensive, particularly if they’re celiac approved level gluten free. You can’t just use regular rice, you have to make sure it’s uncontaminated.

Anyway, the simplest way to get around that is not to buy those products. They’re not necessary except as indulgences.

I’m intolerant. I only discovered it while trying to address my acne. A friend said wheat and dairy are often culprits, so I dug in, found paleo (though am now more “primal,” I suppose), and found that it’s the gluten for me. Of course, after mostly giving it up for a long time, I noticed less bloat, more energy, etc. etc. I rarely talk about it anymore because I do feel like people are always trying to discredit the idea and laugh about how trendy it is. I can’t blame them, we have seen some ridiculous diet trends come and go over the years. But not all ideas should be thrown out just because they happen to become trendy, sometimes something is trendy because it just makes sense.

I have not eaten wheat since the 1970s when I was diagnosed with hypoglycemia. I have since experimented with myriad other grains with the same result, fatigue and brain fog. I have encountered resistance based on the fact that I have never been tested for celiac disease. By trial and error, I have also discovered, as confirmed by this article, that eggs and dairy products, however brilliantly fermented, do not agree with me. Many thanks for the sharing this information with people like me, who get little to no support from our doctors!

I love this article! I found out I was gluten intolerant by removing it from my diet. I didn’t have the typical celiac digestive problems, but I have suffered from eczema my entire life. I found that when I reintroduced the gluten, my eczema would return, my face would break out, and I’d experience a few days of brain fog. I’m glad that NCGS is getting some recognition because I always feel like a “liar” when I’m around some of my friends who have severe celiacs with all the lovely digestive issues. I’m glad that I don’t have those, but I still do have issues when I consume gluten and it’s great that there’s some evidence that it’s not in my head. Also… I love when my Italian grandmother asks how my “diet” is going and tells me how bad she feels for me! LOL

Thanks for writing this Chris. There are still people out there who say that if you eliminate wheat containing products from your diet, you are not getting enough B vitamins. You know, eat your bread or you will be nutrient deficient.

Anyway, I have been following a “Paleoish” plan for over 4 years. I am one of the people you featured in a blog post of success stories. I am still doing well without eating bread. (Laughing) I had a LOT of health problems before I eliminated gluten from my diet… I was gassy and bloated, but thought that was a normal consequence of eating food.

I have maintained my weight loss, though peri-menopause has contributed to a 5 to 10 pound weight fluctuation. I can deal gracefully with gaining a few pounds as I get older, though I expect that will level off as my hormones normalize.

My mother has also seen great success with this dietary lifestyle. I do wish others in my family would see the light and change their eating patterns. It is difficult to see those we love feeling miserable.

I suppose I’ve been living with skin conditions since I was young but didn’t connect the dots until recently. Then this year I was diagnosed with a chronic autoimmune disorder. After strictly cutting out gluten and dairy I started noticing improvements. I’ll admit, in the beginning I had my doubts about ‘gluten intolerance’. For one, it was a staple part of my diet growing up, how could it possibly be causing problems only now. Secondly, there are so many other things that could have been the culprit that I didn’t want to speculate.

Now I know that the effects of years of exposure are finally catching up with me and it is terrible. Similar to the majority of the population, my social circle has not yet fully excepted this problem in my life and who knows when they will. I can appreciate for some people it is a lifestyle choice but for others, like myself, it is a necessary change.

I am gluten intolerant so far as I know. I took the one test and was negative. But…when I stopped gluten, over 3 years now, my arthritis has improved, my gut pain is gone, my alternating between diarrhea and constipation is gone, and I enjoy eating again. A couple times I have been given something with gluten and bingo, diarrhea and bowel pain the next day. I’ts real!

Also made my asthma better! The benefits of going GF are truly miraculous for me personally. But the public is so damning about it that makes it harder than it should be. Now we ask restaurants to specially prepare GF meals for us and we can now go out and enjoy ourselves, too.

Chris, can gluten sensitivity cause unsteadiness on one’s feet? My 78 year old Mom is getting progressively more unsteady (walking carefully with legs splayed for balance). She exercises almost daily so I’m thinking it’s not her muscles and may be her cerebellum. In “Why Isn’t My Brain Working?” Dr. Kharrazian mentions unsteadiness may be a sign of a problem with the cerebellum. Could gluten intolerance be causing an autoimmune attack on her cerebellum? Mom is suspicious of anything that’s not mainstream medicine and it will be difficult to convince her to get a Cyrex test or go to an integrative practitioner. Any advice on what may be causing her condition and what I can do would be appreciated. Thanks.

Hi Chris, I cut gluten out years ago, with a few minor trials over the past few years. In fact, due to various energy and digestive symptoms am on something close to an AIP diet, with coffee and chocolate being the hardest to drop. I have some pretty persistent symptoms that people keep saying looks like gluten reaction: dark black circles under eyes, fatigue, brain-fog, sore joints…. Do u think it could indicate a cross-reactant with coffee or chocolate? I don’t have instant reactions to anything in my current diet except fructose, so it’s currently just an exhaustive daily challenge to wade through various persistent symptoms despite a very restrictive diet.

Have you ruled out mold sensitivity or environmental toxin. Coffee and chocolate are 2 of the highest mold contaminated foods, according to Dave Asprey. Check out his movie MOLDY and see if any of it rings true for you. According to his movie, 50% of buildings contain mold and 25% of us are genetically mold sensitive. It’s usually one of the first things a good FM doc inquires about when doing a case history review.

I am gluten intolerant! I was diagnosed with graves disease 20 years ago! I now see a ND. He does CRP and ANA testing on me every year! Both test were high even though now I feel well. He had me stop eating all gluten and retested me 4 months later! WOW both indicators went into normal range! He says there you can’t eat gluten. Could these indicators, CRP inflammation and ANA antibody test be high with a gluten intolerance? I am sure I wouldn’t have an autoimmune disease if I stopped eating gluten many years ago!

I was diagnosed with gluten intolerance by a psychiatrist several years ago. I was suffering from depression and ADHD. I thought he was crazy – telling me that a Paleo diet would help. It did – and I am off all of my meds today and happy. I don’t remember what lab he used for testing. I do know that I tested negative for Celiac, so doctors, wait staff, and sometimes family do not take me seriously. The societal and cultural backlash can be difficult, but it’s worth hanging in there!

I was diagnosed with an IGA food intolerance test for Gluten and Dairy and they have came back positive. I have been Gluten free for over 2 years basically and to be honest. I felt a slight improvement but it didn’t cure my digestive issues with bloating and functional dyspepsia. I’m now trying the Paleo/SCD diet as I was recently diagnosed with leaky gut. Now did gluten cause my leaky gut? That’s another question entirely!

I am a family physician who developed recurrent angioedema 5 years ago, eventually found to be gluten (wheat) related. This was prior to the book “wheat belly” and before Paleo was as common word as well. I know very well how the medical establishment views anything new that challenges the traditional paradigm. Fortunately, my own MD of 30 years, is an open minded and pragmatic fellow, and we sorted things out. The angioedma resolved, as did 30 years of migraine, dermatitis, and GERD, as well a 10 lbs of belly fat. To say that I became a “crusader” in my own practice after this is probably accurate. I have lost count in terms of the number of people who have had dramatic improvements in their health due to my advice regarding gluten and fodmap issues. That said, in a general population (not the self selected folks that seek out the Dr Kressors of the world), there is more often than not, tremendous resistance to this advice, sometimes even after a positive response to diet changes. This had lead me to believe that there must be, at least for some, an addictive component to these foods, much the same as many of my long term smokers still smoke, despite overwhelming evidence and advice to stop smoking. The science of behavioural change is clearly very complex!

Ooops, hit ‘send’ while still typing! Well, he talks about the exorfines in gluten (and dairy and soy and spinach!) not being broken down due to an enzym deficiency or the enzym not working properly. The exorfines do not leave the body then but are taking over the place on dopamine receptors in the brain. Like the body can get addicted to morfine, it now is addicted to exorfines from gluten, because the eNdorfine system does not work properly anymore. There are 70 things endorfine takes care of and they all can get wrong because of the intake of exorfines. ADD, ADHD, diabetes, fybromyalgie, artritis, rheuma, etc. There’s heaps of info on that website and I can not tell it all here, but it is in Dutch…(I am Dutch) so maybe use google translate..?! It is exendo.be Sorry for the weird English, difficult subject to translate.

I discovered my gluten sensitivity three years ago when my husband and I went primal. I was diagnosed with Rheumatoid Arthritis four years ago and have seen a significant reduction in symptoms by eating a gluten-free diet. Upon mentioning this to my rheumatologist, he ordered the standard celiac panel, which of course came back negative. However, I have made every effort to remain gluten-free and my quality of life has improved dramatically.

I went grain free a few years ago, after stumbling onto Mark’s Daily Apple, which led me here. I’ve never done strict paleo, just follow the more lax Primal Blueprint. My eczema gastrointestinal issues cleared up right away, and slowly, so did the pain in my knuckles and elbows in cold weather (or really good air conditioning), I also noticed that my ADD symptoms improved. A few minor cheats later, I realized that corn caused my GI issues. Wheat messes with my eczema, joint pain, and ADD symptoms.

I finally did a dairy free trial, and found that my sinus issues improved greatly. Pollen still kicks my butt, but not as bad as before, and I don’t stay congested year round anymore. I think I may have to go strict paleo, or even possibly autoimmune paleo, to get the remaining allergies and ADD symptoms cleared up. I’ve got to get my sleep straightened out first, because I don’t want to have to give up coffee for any length of time without adequate sleep.

My sleep is 100% after two sleep studies confirmed sleep apnea. The solution for me was not the CPAP machine. I see a dentist who has personalized a dental appliance that is re-training my lower jaw to its natural position.

My problems started 4 years ago with a stomach that would ache, actually hurt for no reason, also constipation, gas, bloating etc. Started taking apple cider vinegar mixed with juice with my meals. Seemed to help, but still had issues. Quit that and went to betaine hydrochloride, now up to 4 pills per meal and WOW what a difference. I also started with real sauerkraut, probiotics, and enzymes. I used to be a big beer drinker, long story short, I had to quit as for some reason my body just would not tolerate that anymore thinking it was the wheat in the beer, after 45 years of consumption. I changed to wine and all was well. Then, I quit wheat and WOW things are now better than ever. Actually I am cured. I have zero problems now. I am so glad I was able to put 2+2 together (wheat in the beer) and wheat consumption in processed foods.

Chris, I read some people who think they are gluten intolerant are really reacting to the glyphosphate (Roundup) that is sprayed on wheat just prior to harvesting to make it easier to harvest. Can you address this issue at some point?

According to Don Huber, glyphosate is sprayed on a lot of crops prior to harvest to make them “mature” faster. Therefore glycposate may be in a lot of foods that aren’t GMOs. You probably have to stick to organic foods and purified water to avoid it.

Roundup is a systemic desiccant herbicide. It kills the plant by drying it out. It is used in grain crops where uneven ripening is often a pre-harvest problem. If all the grain is dried out, it’s easier to mechanically harvest. However that means some of the harvested wheat is not fully ripened, as well as exposed to Round-up. These may both be an issue for digestive problems.

I contracted PMR about 5 years ago. Symptoms are similar to arthritis tho it is not that. I have found that even one meal with hidden gluten will make it excruciatingly painful to walk. So it’s been really easy to cut gluten out of my life. I do also have Hashimotos and am allergic to caffeine. So very interesting article, Chris. Thank you.

I also have hosimotos and graves. My gluten symptoms manifest in the form of hives. My allergy panel came back with too many allergies to list. I do my best maintaining a diet that eliminates all of these, but most of my family does not understand and food is not accommodating at family events. I hope more articles like this will encourage research into some relief from all of this.

After doing the reset diet for 2 months, I started adding back foods, following order suggested in Chris’s book. The first time I let my husband talk me into “Just a couple of pancakes probably won’t hurt..” I had gastric distress (cramps mainly) for 2 days. I haven’t knowingly had anything with wheat in it since. I’m 72 and have a congenital lung disorder (born without cilia) but am in much better physical health than my mother was at my age. She passed away from congestive heart failure at 76 so I’m hoping I have more years than she did!

I’ve always been told my problem was IBS, mixed with hypothiroidism. I just had to get used to feeling sick, to being exhausted, to feeling awful after every meal… Last year I finally got tested, results were negative but my gut was injured. So I just took gluten out of my life and the results are so obvious I don’t even think about reintroducing it to be sure. Doctors still tell me it’s in my head, that a change in diet can’t have such a huge impact on my health…

My Kaiser docs (GP and dermatologist) insisted that the test results that showed gluten sensitivity were not reliable and that their brand of evidence based medicine would help me. They prescribed meds and told me not to waste my energy and money on a gf diet and to go splurge on the foods I had been missing. Well, I was so hopeful and the donuts were delicious but the consequences were brutal. The worst was that I fell into a deep depression.

I would like to visit you, Doc and see what else I can be doing. I would also like to know what I should tell these Kaiser docs. I feel that they are irresponsible in their advice (first do no harm) and that a respectful rather than disdainful approach to new potentially helpful approaches to health problems would be more productive!

Lastly, I would like to know if anyone can offer positive outcomes for MS sufferers with these new ideas of sensitivity and follow on lifestyle changes.

Diana, I’m so sorry you had doctors so irresponsible in their treatment recommendations. There are two statements I hear almost daily from holistic practitioners. 1. All disease begins in the digestive tract (your gut, gastrointestinal system). 2. Food is medicine!

If you can, seek out a holistic nutritionist to help you plan/change your diet. (functional medicine/naturopath,even a chiropractic office can help or refer you) Doughnuts are NOT good! Processed, packaged, canned, fast food, etc. are not good for our bodies. If you are suffering from MS, your diet could be extremely important to your quality of life. Another consideration for MS is your dental health. Your GI tract begins with your mouth. Do you have mercury fillings a/or root canals that should be removed? If this applies, please seek out a holistic dentist to help guide you as well. Your immune system is essential for everyone but especially those with chronic disease. Heavy metals, less than nutritional food consumption, prescription medications, toxic environments….they all can place a burden on your immune system making it difficult for your body to fight against invaders and heal itself. Best wishes for you~ Tracy

As far as MS check out Dr Terry Wahls website. She was in a reclined wheelchair and is now biking and walking using a protocol that is based on paleo. She is also running clinical trials. She treats patients with head trauma and says she sees improvement using her protocol.

Yes, there is very useful information about MS (and many other disorders!) in Dr. David Perlmutter’s new book called BRAIN MAKER.

Its an incredible eye opener and I would consider it an “adjunct” to what Chris maintains in his publications…

As a neurologist, Permutter focuses mainly on the BRAIN and its many disorders. I’ve been following his advice for just 10 days and see an incredible improvement in my mood (have sub-clinical depression), skin (severe rashes, acne) and energy level!

For MS and other autoimmune issues, check out the Wahl Protocol that Dr Terry Wahl developed and used to reverse her progression MS that had her in a reclining wheelchair or in bed until she started this nutritional protocol. Within 9 months she was able to do an 18 mile family bike ride and no longer needed to use a cane. She continues to do clinical trials using her protocol. Her Ted talk was the sensation of 2012. Google it to listen to it.

Chris, Thank you for the “3 Reasons GI May Be …” article. I have been gluten free for about 18 months with good results. I am also dairy sensitive. I can cheat a bit on dairy via very small quantities, lactose free milk, and a lactase enzyme supplement when in doubt.

My comment re you article is that I have worked with two doctors – one on a ongoing basis for two years and another (a Dr. K. Clarke out of his Pittsburgh based Celiac Clinic) as a second opinion. My Ohio based doctor took 6 months to diagnose celiac with multiple biopsies from just about every part of my gut. He and I were persistent following a negative blood test! He claims that I am one for the books as the positive biopsies came uniquely from my lower intestine. Post conversion to gluten free I had multiple symptoms that took more time to diagnose – very low B12(35 vs 250 target). B12 absorption occurs in the same area as my positive celiac biopsie. I am now on monthly B 12 injections with very good results. As I love bread, and was suffering from the low B12 Idecided to go to Dr. Clarke for a second opinion. He reviewed the blood test results, did a number of other tests (no blood was drawn) and concluded Post Infection IBS stemming from a very bad reaction to scallops 10 years earlier which was in fact the start (without letup) of my digestive problems. He prescribed the elimination, sequential readmission / test of foods to determine my going forward diet leading to gut healing and potential complete healing / unrestrictive diet. I decided to stick with the celiac /dairy diagnosis and have not looked back.

My point – we need education re the more extensive testing approach and more carefull research. Keep up the good work.

I inadvertently removed gluten from my diet 3 years ago when I read that grains may be causing my joint pain. After not only getting rid of the joint pain but a plethora of other problems I had suffered with for years (and I was only 23 at the time – so thankful I figured this out early in life!) I noticed if I had even a minuscule amount of gluten or my food had been cross contaminated with gluten I would get extremely sick for several weeks. I could no longer eat at restaurants or as a guest in somebody’s home safely, yet I never got sick from gluten free grains (I just felt a little crappy). Thats when I realized gluten must be the issue. This was difficult for me to believe because even though I had about 15 or so symptoms clear up after removing gluten, digestive problems were never one of them until it had been out of my diet for a while. It was also difficult for me to tell people “I’m gluten intolerant” because it was self diagnosed and there’s so much backlash against people who can’t eat gluten. I would always have to specify “I can’t eat gluten – but not by choice” because people would insist that just a little bite won’t hurt my silly diet. I finally went talked to my doctor about it last year because I hated not having an “official” diagnosis. I knew she wouldn’t be able to test me after not eating gluten for over 2 years but the fact that she 100% agreed with me made me feel validated.

I have been tested twice for celiac and both tests came back negative. I had terrible intestinal issues and chronic diarrhea. I have Hashimotos and am lactose intolerant too. When I had a colonoscopy the GI did a biopsy and found microscopic colitis, which is extremely irritated by gluten. I have been gluten free for over a year and have had no more diarrhea. We have since found out my daughter has Celiac and two of her four children have ncgs. So i think I would have tested positive on those tests had my doctors been more thorough. So I remain happily gluten free 🙂

I went off gluten for a month, and I could breathe through my nose for the first time in my life! Went out for Italian food to test it and 3 days later was congested again. Even eating a bite of bread would make me phlegmy. Have been off gluten for 7 years now. Don’t miss it much and it’s really nice to be able to breathe through my nose 🙂

I stopped eating gluten a few years ago to stop my migraine headaches. Now I am extremely sensitive to gluten. If I accidentally eat it in about 1 to 1/2 hours I get a pain in my stomach, nausea and sweat profusely, followed by vomiting and lethargy. After I have nothing left to vomit I get the chills for a couple hours. Is there anyone I can see to help me with this? I guess the good news is I don’t get migraines anymore.

There is so much emotion attached to this issue. I completely can relate to the statement in CK’s well written article that “This silent form of CD is far from harmless; it is associated with a nearly fourfold increase in the risk of death. (2)” My mother just passed away from scleroderma.She was only 70. I tried so hard to get her and my family to make her meals GF (I don’t live in the same city). The sad thing is they tried but failed and many of the products they bought had horrendous ingredients (even though I explained which ingredients were good and which were harmful). One of the breads they bought was actually called “Everything but Gluten!” it had soy, canola oil, sugar, a ton of toxic ingredients. Even the meal replacement they gave her in the hospital had canola oil as the third ingredient. This is for REAL people! Chronic autoimmune diseases do take lives and the doctors who treat them (mostly conventional in Canada) do not believe in the relationships between food and disease. No one ever tested my Mom for celiac. But they did every other test on her heart and lungs. The doctor can make all the difference- my mother believed in her doctors- who told her to take drugs and that she would die of this disease. If they would have told her to stop eating gluten she would have. Instead she constantly self-injured her body with gluten and other bad processed food. Part of the blame is on her for not taking control of her health. I blame myself for not insisting she get tested for celiac. I ordered an autopsy on her and I read the results now of her stomach “autolytic changes are present with associated loss of mucosal architecture, patchy acute and chronic inflammation and local hemorrhages.” To quote Dr. Peter Green author of Celiac Disease, A Hidden Epidemic, ” If the intestinal villi are inflamed or destroyed, the digestion of food can be altered, disrupted, or completely halted. Food is maldigested and malabsorbed. It remains in the lumen,enters the colon, and causes diarrhea. And malabsorption feeds on itself-the lack of nutrients radiating throughout and eventually affecting the entire body.” That’s what happened to my Mom, the effects of gluten, I would argue, were progressive but devastating which took away her will to live. People in pain and who are on oxygen in the end and who are told there is no hope- why would they even consider giving up apple pie or alcohol? It’s up to doctors to get it right and communicate the relationship between food that damages and impairs the body and disease that kills. Sick people go to the doctor and a great deal of them believe everything their doctor says. The people reading this website are the ones who are taking control of their own health- that’s great! How can we help/reach the others (including the doctors) who don’t know about this?

My mother died in 2004 from Scleroderma. She had CREST, and basically starved to death. Her doctors told her it was all in her head and she didn’t get a definitive diagnosis until a year before she died. She refused to get another doctor and none of us knew anything about gluten back then. Since then, my son has been diagnosed with NCGS, and I have Hashimoto’s. A niece has Grave’s. My son and I were both treated for Celiacs, but it wasn’t a thorough test. My symptoms with gluten are mainly fatigue and joint pain, but it only takes a little bit. My son’s are very severy gastric issues, including bleeding. I’m surprised that neither of us have Celiacs but I’m going to suggest further testing for us both, especially looking at our family history. One more thing I find interesting. We’re immigrants, and no one in Norway are experiencing the same things we are here in the US.norway are experiencing the same things we are here in the US..

I am 100% convinced that eating wheat germ on my yogurt DAILY for many years destroyed the cartilage in my basal thumb area. When I gave up wheat germ–after reading all the anti-grain literature–my previously chronic pain completely went away and I regained my almost totally lost grip strength (I was dropping everything and couldn’t open a heavy door with the affected hand). I did gluten challenges that didn’t seem to affect me, and I had a complete work-up for celiac, but it showed nothing. For me, the wheat term was much more damaging than gluten. I am totally convinced of this, at least in my own case.

This is a topic that boggles my mind. I do follow many blogs on both sides of the issue.

I must say, I have happily added back most things to my diet without and negative side effects. Gluten, however, is something I am hesitant about. I suppose I should and see how my own body reacts.

In the end, we are all so different. Some of us are carb-loaders (hi!) and some of us are keto. There are many factors in play, and between specific genome and microbiome combinations, it’s hard to say what works.

But it sounds like gluten IS a problem for at least some people who are not diagnosed celiac.

Do you have any info on Gluten Intolerance or CD after surgery? I have read that it could get worse after surgery, but I can’t find an explanation why it does this. Mine became worse after I had a laparoscopic surgery. (I had the surgery to see if my ovaries had cysts, thinking that was causing my pains in my hip, and lower back, but they found nothing. Later I stopped eating gluten and within 5 days I felt a million times better). My mother in law just had heart surgery and is now having lots of diarrhea and other issues not related to her surgery. Should I ask her doctors to test for CD?

Kris RE: Despite overwhelming evidence to the contrary, uninformed journalists and armchair Facebook scientists continue to argue that NCGS is some kind of widespread collective delusion—simply a figment of the imagination of anyone who claims to experience it. And for reasons that I do not fully understand, they do so with an almost religious fervor.

My response is a jaundiced and sceptical view that a third force is at play inundating media with twisted stories to protect a financial position.

I don’t doubt that you’re correct, but I also think the Dunning-Kruger effect is part of the explanation. https://en.wikipedia.org/wiki/Dunning%E2%80%93Kruger_effect. Many “science journalists” and lay people lack the ability to critically interpret a study like the Gibson paper (which was erroneously used as “proof” that NCGS doesn’t exist), yet they do not seem conscious of their ineptitude.

Chris, this may be more sinister than the standard practice of paid, corporate trolls on the internet tossing out disinformation and misinformation.

According to Dr Tom O’Bryan’s recent June interview on Lisa Garr’s Aware Show, gmo wheat has already been approved and is being grown now. Most likely, this new modified product will not be labelled.

As you can see, this blog is already loaded with comments. My jaw dropped when I learned that gmo wheat had finally gotten federal approval. Since when? Gmo wheat had been blocked for years. Thus these seemingly ignorant denials in the press start to take on a different light, eh?

Just hope you are doing a great job in training others in your protocols, because surely looks like this latest insult to the US food supply could be a real mess in the making.

I was on a study of rheumatoid arthritis and diet by Gail Darlington in the U.K. about 35 years ago, and I found that wheat was one of my problems. This specialist wrote a book about her results and she included information on leaky gut that long ago! I also developed Hashimoto’s because I used to cheat on the diet occasionally. But after finding out that the antibodies to gliaden stay in the system for 3 months, I am completely wheat free, and I have cut my thyroxine down from 100 mg to 25 mg. Before I knew about the wheat problem, I found that when I lived (in Iran) or traveled in hot countries (India) – where the wheat is “soft” and did could make European style bread, my symptoms vanished. This may explain why our ancestors could eat grains without too many problems – our wheat has been highly bred for maximum gluten. As an aside, this is the same for me with milk. I and my mother and sister are allergic to cow´s milk (we all had sinus problems) – again cows have been intensively bred and have a type of casein that is not common. But our family can eat milk products from sheep and goats. Modern agriculture has a lot to answer for.

Don’t forget, in Europe – at least in central Euope like Germany where I’m from – they have different agriculture regulations than here in the USA. For instance, many foods over there containing grains I tolerate, whereas here I don’t. The same goes for Milk Products! Could be that in Europe they FORBID the spraying with Roundup, GMO technology of crops, or the growth hormones & antibiotics treatment of cattle.

Hi Chris, I have self-diagnosed my gluten intolerance after severe rheumatic pains that have me bed ridden for at least a couple of days. I also react to coffee with the same symptoms. While I was able to quit coffee, I can’t say the same thong about gluten and occasionally have some fresh baked bread or pizza, and suffer from it. I am now pregnant and find myself craving these the whole time. Every week I cave in at least once, paying miserably for it for the rest of the week. I feel like a drug addict.. My fear is that I am hurting my baby because of the symptoms I have. Am I? My doctor said that I would have to be severely ill to cause any harm to the baby, but somehow I don’t believe it. My biggest question and concern is if I am causing any harm to the baby, and will he suffer from the same Conditions I have? Should I feed him gluten when he will be on solids? What if he doesn’t react to it but he is still sensitive? Please respond and help me clear this, thank you for what you are doing, you are touching our lives in so many ways!

I read somewhere by one of our many experts on gluten sensitivity, that you should not expose a child under 2 to wheat. I can’t remember who it was but his argument made sense to me. Maybe you can Google it? I had 20 symptoms go away completely when I changes my diet. The most severe ones were caused by gluten, the others went away when I added fat and upped my protein intake. Food is powerful!

In September of 2014, I started seeing a chiropractor who was very knowledgeable about health issues. His wife has the same disorder as I do – Hashimoto’s (an autoimmune disorder which affects the thyroid). He said his wife has the same disorder and so, while not an expert, he had done lots of research and that I might want to consider giving up gluten. I decided to take the plunge. Long story short, after months of problems caused by my disorder and the difficulty in getting my dosage of synthroid right, getting off the gluten and seeing this doctor has restored me to excellent health. My thyroid numbers have been normal for months!!!! I haven’t had anyone criticize because it is hard to argue with results. My friends and family know all the things I had been dealing with prior to giving up the gluten.

Hi, I have been diagnosed with several Autoimmunities and one rare disease. I also have food sensitivities aka Glutens. I have found really good products that are Gluten,Soy free. Low glycemic with high Protien, minerals and vitamins. I would be happy to share with anyone this info. I am on FB.. Thanks, Jamie Moore

We are gluten free as a family, principally for my husband’s health problems, but we have all benefited. A relative of mine came to stay who has ulcerative colitis. By the end of the week she looked a different person and was having normal bowel movements. Then she remembered how much better she had been some years previously on the Atkins diet.

As I’d done a fair bit of research on this topic, I was able to tell her about Elaine Gottshall’s experience with her young daughter, diagnosed with ulcerative colitis back in the 50’s. For anyone unfamiliar with her story, it’s worth checking out, on-line or in her book, “Breaking the Vicious Cycle”. Elaine Gottshall has since passed away, but others like you, Chris, have taken up the mantle. Also, a Russian doctor, Natasha Campbell-McBride, and her GAPS Diet that some may have come across, gluten free but also cutting out other carbs.

The sad thing is, my relative didn’t keep up the gluten free diet and is very poorly. If it had been her doctor that had instructed her to be gluten free it would be a different matter.

Several people asked about the validity of IgG tests. I do a lot of research in peer-reviewed journals, and I can assure you ELISA-type IgG testing is commonplace and accepted in a range of fields for a variety of purposes.

IgG testing is not recommended for diagnosis of food “allergies” because those are more often an IgE response (and are usually more immediate and can be life-threatening), and testing IgG won’t give you that information. Chris is very careful to talk about sensitivity, rather than allergy.

It took 30 years to diagnose my food allergies because my reactions are not immediate. I now have multiple food allergies , documented by a Board Certified allergist. I can drink dairy and just have a stomach ache the next morning or diarrhea a few days later.

I was tested for CD 20 years ago, was told I was wheat intolerant but there was no sign of damage so I carried on eating wheat. I bad a scan of my gall bladder because I was in a lot of pain but no stones were to be seen. 2 1/2 years ago I was finding it painful to sit in an easy chair, then started the symptoms of polymyalgia rheumatica, which the doctor tested for and told me everything was fine. I started having acupuncture and taking vitamin B5 along with fish oil and other supplements, and on the advice of my acupuncturist attempted to cut gluten completely from my diet. The pain in my gall bladder area has significantly improved, and I don’t bloat so often. The polymyalgia rheumatica is also receeding gradually. I asked my current doctor if I could have help with the cost of gluten free foods but was refused as I don’t have CD and anyway my doctor doesn’t know there is anything wrong with me. I have not pursued the matter as I would not wish to take steroids, I am doing quite well on the alternative medicine route, neither would I want to eat gluten for weeks in order to have another test for CD, I suffer for days after accidentally eating a wheat containing food!

About 30 years ago I went on the Atkins diet and lost a lot of weight. I also noticed that my severe pollen allergies went away at the same time. At that time I was typically on two different inhalers in both the spring and the fall. When I quit the diet my pollen allergies returned. So through trial and error I eventually figured out that it was the wheat that was causing the problems. I have no idea if it was the gluten specifically or some other part of the wheat. Nevertheless, since I quit the wheat I have rarely gotten so much as a runny nose during pollen season. I’ve been living wheat-free for so long now that I don’t even think about it. At one time though there was nothing I liked more than a fresh-baked bagel. I also now live in one of the worst areas in the country in terms of pollen counts (Tennessee). When someone here now complains of pollen allergies I suggest that they eliminate wheat for 30 days and see what happens. No idea if that has ever helped anyone but it is really an easy intervention.

I have been eating gluten-free and dairy free for several years after a trip to Haiti, where I contracted several parasites (which are now gone).

My symptoms seemed to improve being on a GF and DF diet. A couple years ago I wanted to see if I was really intolerant to gluten (since I had been on it for years prior to the trip). The doctor did a generic blood test, which came back slightly positive. After going back on gluten for 3-4 weeks (eating sourdough bread several times a day), my endoscopy came back that I was fine.

My question is, can I still be gluten intolerant with a negative endoscopy (the “gold standard”)? Also, would you recommend reintroducing these foods back in to see if I could tolerate them?

Reread first the paragraph under “1: Celiac disease is far easier to diagnose than NCGS” If there is no damage to the gut, an endoscopy will be negative. So yes, you can still be gluten intolerant with a negative endoscopy.

I am gluten intolerant and because my doctor at the time didn’t believe that is what was wrong I pretty much am self diagnosed but doing 3 weeks without gluten and then slowly adding it back in. During those 3 weeks a lot of my symptoms got better but the minute I added it back they returned so I went gluten free 6 years ago and haven’t looked back. I have never readdressed it with my doctor even though I have changed doctors because I figure it will be the same as before, not really believing me. Luckily my friends and family are very accepting and understand for me it isn’t a fad diet. I do get frustrated with the lack of GF options for me at the grocer or when I go out but that comes from living in a very small town.

Thank you Chris! You have been such an encouragement in a world of denial and disbelief. I had allergies (food/pollens/antibiotics) all my life; developed a lifelong idiopathic seizure condition in my teens; suffered bowel troubles, skin issues (acne/eczema), estrogen dominance, increasing debilitating migraines, brain fog, head explosions at night (not sure what they were, but sudden sharp bursts of pain), hypoglycemic “shakes”, increasing chronic pain/atrophy in joints, back and forearms, nail fungus and gradual 10-lb weight gain in my 40’s. I thought I was dying. The migraines were my worst problem, taking me down for 3 days at a time, unable to be a wife, mom, etc. Traditional medicine controlled the grand-mal seizures. I could not take pain medications because of ulcers (allergic?). Allergy meds were becoming less and less effective. Desperate to overcome the increasing migraines, I asked my GP for help Christmas 2011. After taking 1 dose of a common migraine Rx, my migraine lifted! I was elated! Then over the course of the next 12 hours I had the worst 3 grand mal seizures of my life, after being stable for many years. My family spent Christmas Eve taking me to an urgent care to have my head stapled after falling out of bed during a seizure. That was when I decided to begin earnestly educating myself on alternative approaches to my health problems. I happened to see Dr. Davis on the Dr. Oz show in late 2013, bought his book, read it cover to cover, and began my gluten-free trial in January of 2014. My recovery was immediate – within a week, I began to feel better. Weight fell off without trying. No more migraines, and significantly reduced allergies – so much so I no longer needed to take allergy medication. Gradually over the course of a few months, all of my health issues improved or disappeared, except for the arm and back pain. On a few occasions, out of disbelief, I was tempted to test the hypothesis by eating gluten. The next day I had a horrible 3-day migraine, each time. Now, when I mess up and have gluten accidentally, it is only a gut reaction. I don’t know why I could not get rid of the arm and back pain. In the summer of 2014 I tried to go grain-free to see if that would help. I visited a chiropractor whose manipulations actually worsened things terribly (not his fault obviously!) Six months of physical therapy helped lessen both the back and arm pain. Unfortunately, the month I finished PT, I came down with mono from EBV – at the great age of 50! Since I had tried to go grain-free in the latter half of 2014, I wonder if I was too low on carb-intake. Could this have increased my pain levels? I did lose significant weight (unintended) and became slightly hyperthyroid. In January of this year I desperately added gluten-free grains back to reverse the symptoms, and that seemed to help. However, I had already compromised my immune system and contracted EBV. In summary, I have my life back (though contending with EBV currently), and thank you and Dr. Davis for all you’ve done to bring gluten sensitivity to our awareness. I only wish I had been under the care of a naturopath during these changes over the past 18 months. If my progress had been monitored by a health professional, I think I could’ve avoided the pitfall of not getting adequate carbs, especially in light of increased exercise. Moms tend to focus on everyone else, so it’s easy to miss our own health issues. I would encourage busy people, especially moms, to embark on significant dietary changes with experts on hand! Thanks again for your informing and encouraging website and e-mails – I feel I have a hand to grasp now.

I just read a similar article about a month ago and decided to get myself tested. Still waiting for the actual pyrrole results from urine. BTW Even though I take zinc daily, I was very low in zinc acc. to the blood test. Apparently, not all zinc is created equal. A more absorbable form is needed for those with pyrrole issues. I’m still waiting to hear what that is. I used Direct Health Care Access for the testing. It ran a little over $200 for zinc, copper, histamines in the blood and pyrrole testing in the urine. I am in no way connected with the company.

WOW Catriona Reading what you shared here, fits me all my life, specially #28 as a child this was a huge factor when going out with my family. I would always pled with them to find booth and far from seeing eyes. THANK YOU, for sharing this article.

I am gluten and dairy free after having for years suffered with IBS and being mislead in every single wrong direction. Conventional doctors wanted to run tests after tests such as: endoscopies, colonoscopies, stool samples, blood and more. I was quite hesitant to doing all this and fixed my life and health myself. I still a family who is in no way involved with the eception of my sister who fixed her daughter’s allergies by doing The Virgin Diet. My husband and others tell me that it’s simply something crazy that is only in my head. He still tries to feed me scrambled eggs with milk and cheese. I am quite outspoken regarding this, which I feel is the only way that I will remain healthy. I feel I am always on edge because so many people don’t believe me and are ready to gluten or dairy me at a moment’s notice.

At the Celia meetings here in Canada, non support of spouses/family members used to be a big complaint – the leaders found that by strongly recommending that all members be tested by the gold standard of endoscopy for an accurate diagnosis, the family members became more understanding if a doctor gave a diagnosis of Celiac disease – which was only done if the Ttg score was over 20. Many people have already been off gluten for months or more and really hesitate to go back on it for 6 weeks, but the Gastroenterologist I saw said I could just eat one wheat cracker a day or half a slice of bread. It worked and I was diagnosed as Celiac four years ago, Without the official diagnosis, you will never know just how badly your body reacts. The endoscopy shows the doctor if your villi are flattened or not in your stomach. If they are, you have not been digesting your food and are severely malnourished. For example, mine were completely flat and I felt like I was dying. It took a few years before I felt well, as I am over 60 and had been sick a very long time. My daughter who was 30 when diagnosed only took a year to recover. The Canadian Celiac Association highly recommends that your spouse or partner go with you to see the nutritionist that you should be referred to (it is all covered here by our medical plans) so that they can see how serious it is) to learn how to cope, shop, cook and all the test you need – bone density, Vitamin D, and more. I hope you do get tested, as you will have proof that you are not crazy or exaggerating. After you get proof, you need to educate your family on how to keep your section of the fridge, cupboards and counters gluten free. Without a doctor’s endorsement, they will not be very motivated to help you. My Mother died of lymphoma as an undiagnosed Celiac (it is passed down through the Mother’s side) and Celiac disease needs to be taken seriously! Even with your own counter, fridge shelf and cupboard, you still need to be vigilant, as your family will still slip up and cut some bread or buns on you space for example. They often don’t realize that even one crumb will hurt you. I hope I helped someone today.

Yes, I am gluten intolerant. I cut gluten and dairy out of my diet for 3 weeks, and then did a “test day”. I ate toast, crackers, pasta and cookies (like I normally would have done before cutting gluten out. I felt a little bit of tummy trouble that night. However, the worst symptom was that my body pain increased during the following week, until I barely could get out of bed. I hadn’t felt that bad since before I cut gluten out. I DID NOT continue to eat gluten past the test day, or add dairy back in.

Conclusion: It is totally worth it to be 100% gluten and dairy free. Why would I want to spend my life almost bedridden, like before? Yes, it’s a challenge, but over the last year, I have learned to substitute whole, real, foods for the gluten-containing junk food, and that is even though I live where gluten-free products or rarely available.

Thank you for informative articles like this one, which give me the info I need to educate would-be naysayers. 🙂

A few years a go I decided I was going to lose weight and get healthy for good. Instead of dieting, I significantly reduced processed foods, focusing on whole foods. I started noticing how the foods I ate made me feel. Sometimes I would eat something and it would sit there like a brick in my stomach. Or I would feel bloated, sluggish or just kinda crappy. I also got migraines a few times a month. I stopped eating the foods that made me feel bad. When I finally went completely gluten-free, I felt SO much better and my migraines finally went away. But the best part was the depression I dealt with for 20 some years went away. It was like a cloud that finally lifted. My husband, even though he supports me, pressures me a lot to eat gluten. And most of my friends don’t seem to get it either. They’ll say stuff like, one whatever won’t kill me. I always respond with, “I just feel better when I don’t eat it.” Right now the thing I’m struggling with is my oldest son. He’s 9, and I’m pretty sure he’s gluten-intolerant like me, and I’ve tried so hard to switch him to gluten-free. My husband and both of our parents don’t support me. They will feed him whatever they want, and won’t listen to me. Every year, his doctor gives me a hard time about his weight (He’s always been very overweight.) I mentioned the gluten, but he says I shouldn’t do anything drastic with his diet. He just gives conventional advice like cutting calories and increasing exercise. It’s very frustrating! I definitely feel like it’s swimming upstream trying to switch him to gluten free. Everyone seems to be working against it, family, friends, school, doctor. UGH!

A simple blood test for you and your son would tell you if both of you are indeed gluten intolerant or Celiac. The Ttg blood test is very accurate and would let your doctor know if you both need an endoscopy. With this test, you will NEVER need to argue with family members again. They will have to respect your diagnosis and help by following the guidelines for you and your son. Good luck and be strong.

same here, and now im divorced. love is about being supportive to each others needs. if i have to fight for my health and the health of my children even at home then whats the point? seems like sugar/wheat is a dividing factor in some relationships. my only explanation is that eating badly is more like a drug than we know. Perhaps it was even the catalyst in my alcoholism as a teenager. Sober now 23 years, thank God. Peace be with you all xoxo

Thank you for this! I had a Cyrex Array 3 test done years ago, had issues with gluteomorphins, both gliadin-transglutaminase complexes, transglutaminase 2, and two transglutaminase 3.

I have never been able to find anyone to explain what that puts me at risk for down the line, and so have not been very faithful to a gluten free diet. We need more info out there to understand our labs…

I wonder about the people who claim they have “cured” themselves of food intolerances? Is it possible, by eradicating SIBO and leaky gut, to create a stronger intestinal barrier and less of a reaction? Or is it the case that once the immune system reacts it will always do so?

Chris, I know you have said that grains are okay as long as one follows the traditional preparation methods (i.e. Weston Price) and they don’t crowd out more nutrient-dense foods. Is this not the case when there are reactions like these? Or is it possible that after several years of recovery one could adopt a Weston Price diet with some grains, esp. if they are organic/heritage and properly prepared?

Thank you for this clarification. I have been trying to figure out from all I’ve read from many sources if a leaky gut was the reason people react to gluten. I have had Hasimotos Thyroid disease for 35 years and on Armour, and diagnosed with Sjorgrens a few years ago and told there was nothing that could be done about it. I went gluten free for a month at the suggestion of a nutritionist who said all autoimmune disease is caused by gluten intolerence. I didn’t notice any difference but I do not have obvious digestive issues so it could take, I’m told, years to know.I am willing to go gluten free but want to tested first. I was so thrilled to come across the westonaprice website and find I may be able to tolerate grains if properly prepared and raw grass fed dairy products, as dairy would be the hardest for me to give up. At this time I have given up white sugar,white flour and white rice. I have switched to raw grass fed dairy and grass fed meats, eggs,organic fruits and vegetables.Replaced vegetable oils with coconut and olive oils. Properly prepared grains and nuts.This is a far cry healthier than my former carb addict diet of lots of white pasta,cookies and pasteries washed down with lots of pasturized milk. I don’t like a lot of foods but this is doable for me. Some health advocates want you to give up so much you don’t even bother trying. I think this is a great disservice to many.Why aren’t these heathier alternatives mentioned instead of the blanket gluten ,dairy,egg,nut,etc. free?

Great article! I’m pretty sure I’m gluten intolerant. I get sick when I accidentally ingest gluten. I think I have some problems with other foods also, but not sure which ones. I have discovered all of this on my own, as doctors in my area generally don’t associate foods eaten with health issues. I had no idea that wheat could cause skin issues. Have had psoriatic looking fingernails and toenails since high school, again self diagnosed. I have also had trouble with migraines since college. When I started eating paleo about 2 years ago these things started clearing up. I still have issues occasionally, so I have some work to do on my diet. I live in Northwest Ohio and the attitude about gluten or any dietary sensitivity is typically scoffed at, which makes this extremely hard. My family even pokes fun at times. Finding a doctor would be a great help as I have had to do this by trial and error and not really sure what all I have trouble with.

I quit gluten 6 years ago despite my doctor saying there was NO WAY that my digestion/bloating/pain issues had anything to do with food. I decided to go grain free when my symptoms improved but were not entirely cleared. Friends told me if I didn’t eat grain I would never poop again. My family was not supportive beyond, “Okay… you don’t have to eat it if you don’t want to.” My husband has Lupus and refuses to change his diet at all and refuses my offers of anything other than grilled chicken (which he usually follows with crackers and beer). My daughter is 16 and has just gotten her first signs of thyroid failure and is now taking steps to eliminate gluten, hoping it can bounce back.

I definitely feel better after eliminating grains. No more daily bloating, abdominal pain. My hair is not falling out. My skin doesn’t hurt, and my complexion has improved. I have had a little improvement in thyroid function but not much.

I am so happy to have found this article to share with family. It took over 10 years of daily IBS issues to be diagnosed with medically confirmed gluten intolerance and allergies to wheat, eggs, lactose and tomatoes. My cousin who is not a Dr diagnosed me and my so called allergist who gave me countless unnecessary antibiotics finally confirmed my cousin’s diagnosis. Doctors are not all as smart as they believe they are. This article is spectacular and explains many issues in our gene pool. Thank you. Thank you. Thank you.

I was sick with acid reflux for years, then I did the Entero Labs testing, including DNA testing.

Have you felt judged or criticized by your friends or by your doctor for following a gluten-free diet?

Absolutely! Some think I’m crazy!

Do you have someone in your life that you suspect is gluten intolerance, but is in denial because they don’t believe in it?

Yes, several people, unfortunately. They don’t want to know, they don’t listen, yet they still suffer. I had the Entero Labs DNA test, and it indicated both my parents tested positive for the gluten intolerance gene. So, I can’t be the only person in my family.

Those of us with relatives from Northern Africa, Western Spain, Portugal, Northwestern France, Ireland, Scotland, Scandinavia or Eastern Europe have a higher propensity to gluten and often casein issues.

I have been strictly off gluten for 2 years (and 3 days, to be exact!). I am NCGS. My only symptom was stomach bloating. But I didn’t even feel bloated, just looked it. I honestly didn’t even see the bloating until I lost a significant amount of weight.

I had gotten Gullaine-Barre syndrome (GBS) 7 years ago. GBS is an autoimmune condition (acute, meaning I recovered), but I took that opportunity to take a closer look at my immune system and health in general. Hence the weight loss and discovery of my gluten sensitivity.

So I agree that people react to gluten in a myriad of ways. And I believe more people are gluten sensitive than care to explore. Gluten is addicting and there is so much marketing and cultural support for our SAD diet, so people really don’t want to face reality. Also, gluten-sensitivity, from everything I’ve read, is progressive. So as people slowly develop symptoms, they attribute them to getting older or that it’s typical to not be fully well. People tend not to really listen to their bodies and they take medicine to cover symptoms.

There are a lot of hurdles to having people even acknowledge gluten sensitivity, much less address it. But thank you Chris for constantly raising awareness on these topics.

I was gluten free for two years after a positive test from Enterolab. I never lost any weight so there’s one in the eye for William Davis and his Wheat Belly. At this point I don’t know what to think. I was diagnosed with Hashimoto’s several years ago, but take no meds. I had IBS for about 20 years, but that went away 15 years ago. I’ve had diverticulitis symptoms that I used to put down to eating gluten, but homeopathy got rid of that pain/diarrhea. Now I eat anything. It’s so much easier on me and my budget. I really don’t know what to think. Maybe my problem with gluten was really diverticulitis. I do have some minor skin issues (bit of itchy rash on elbows) and a staph infection that came back twice, but maybe I just need more probiotics and fermented food. Being on the GF diet was SO difficult. Questioning waitresses and stuff like that was painful.

Hi Chris – Useful table. I’ve read that ELISA blood testing or IgG blood tests are not scientifically valid and unrecognised by doctors here in the UK. See BBC news: http://www.bbc.co.uk/news/health-33115311 How do you address the validity of such tests? Thanks!

The Cyrex Array 3 was developed by Dr. Aristo Vojdani, who is a widely respected and published immunologist. It is definitely true that many IgG and cytotoxic food intolerance tests are not valid, but I believe that Cyrex 3 is reliable. It is both IgG and IgA, and their results are reproducible.

Thank you so much, Chris! A new blog post from you on IgG tests, ELISA, etc. and their validity would be great!! There’s not much info the consumer can find out there on them or how they actually test each food-specific antibody…. Much appreciated.

OMG – thanks for this, so helpful! This explains possibly why my celiac test was negative. I’ve been mostly off gluten for 5 years now, with occasional beer or gluten in dessert from time to time (for which I suffer).

Doctors first told me I had no problem w gluten, but then, finally, some doc told me just to try going off it, and it was miraculous when I did, just after 3-4 days.

I’ve had IBS for almost 10 years. A gf diet has improved my eczema, acne, menstrual irregularities and joint pain. But it wasn’t a perfect fix. I still have pretty bad anxiety/depression, not sure role of food in that.

I also avoid FODMAPS in fruits and veggies now thanks to your site and that helps. I still have IBS and sometimes slow digestion – I think I should get off dairy, but that is hard. This article has reinvigorated my resolve to get my butt in gear and clean up my diet some more due to possible long-term consequences.

A naturopath diagnosed me with NCGS several years ago as well as leaky-gut. I have been gluten free ever since for the better. I react to eggs as well. I don’t eat cheese unless it is at least 90-days aged. I have not had coffee for years because that was causing digestive distress. I do eat at least 70% dark chocolate – and more than I would like. I was wondering what protein is in coffee that causes reactions? Is that the same protein found in chocolate or similar? I have read that those found in coffee are “opioid like” which seems to make sense. Wondering if people with NCGS should avoid chocolate as well?

Note, that as Chris says, it’s not the caffeine, it’s the protein. There’s a link to an update on this subject near the end of the article, plus numerous other references on the coffee protein / gluten connection.

It is my understanding that sprouted wheat (as well as “whole wheat”) contains a high amount wheat germ agglutinin (WGA, which is tested for on the Cyrex Array #3 mentioned in the article above). WGA is damaging to your body even if you don’t have an autoimmune condition. It causes intestinal permeability and gut lining damage. You can read more about WGA at RobbWolf.com and greenmedinfo.com.

in South Africa most of the foods recommended are not available so I have to improvise. doctors are not interested to hear about alternative medicines or practices. blood tests are mostly not available. i rely on my homeopath and this website for guidance

it took the diagnoses of my homeopath who told me my thyroid was seriously inflamed when I thought I was dying to wake me up to the fact that I am gluten intolerant. still struggling after 6 months of strict Paleo and AIP, but feeling better

This is fascinating. Could it shed any light on this great mystery that has plagued me for 20 years? What could possibly be the common denominator here…

I have a strong gastric reaction (putrid gas 4-7 hours later) to… – Almost all forms of bread, including standard wheat bread, rye and sourdough. The worst are supermarket breads stored in plastic, and heavy German rye. – Baked grains, such as cookies and toasted muesli.

I have no reaction at all to… – Pasta. – Raw muesli. – Crepes made with wheat flour. – Also, when young I backpacked through Switzerland and could not afford to buy much food. I lived on local wholewheat bread, cheese, fruit and yoghurt for 10 days. I had no reaction from all that bread, which was totally bizarre.

The Swiss wholewheat may provide a clue: I grew up in Europe eating bread that was slow risen by natural and local yeasts, and to which no conditioners, preservatives, or other extraneous miscellany was added. It was fresh and mold-free, having been bought the same day.

So it may be the yeast strains, the additives, or post-production molds. Any or all three. Heavy plastic does make me suspicious of mold. Or it may be a case of different wheat strains, and/or, as you were young, no GS of any sort yet expressed

Thanks for those thoughts. Interesting. The weirdness has always been that yeast, per se, can’t be the (sole) variable. Toasted grains have the same effect, and sourdough has the same effect. Even fresh, home made, additive-free bread is dreadful.

A food technologist once speculated that I might be reacting to proteins(?) formed at high temperatures – so bread, cookies and toasted muesli, but not pasta or raw muesli.

Then again, I do have a skin allergy to Saccharomyces cerevisiae, so my gut almost certainly hates it too.

The notion of possibly different yeast strains in Swiss bread is interesting. The reaction was very well established at that time, which is why I was so surprised that I was unaffected.

Then again, what’s with the yeast-free toasted grains and sourdough?

One other variable is that if I avoid bread for long enough, I can eat some for a day or two and be quite OK. But if I fall into a habit of eating it regularly, things turn bad and stay bad, even for a few days after I’ve stopped.

I’m NCGI. I didn’t realise this until I have up grains when going Atkins and then Paleo. Prior to this I had explosive bowels, stomach cramps, bloating and reflux; all this disappeared when I stopped grains.

I do still eat bread from time to time, as I like it, normally when we eat out at restaurants. And, guess what, the days after I will have stomach pains and loose stools or even diarrhoea.

Good news is that the lower levels of gluten in beer don’t set it off, so my very bad, and only vice, is safe!

Great article, Chris, I’ll be sure to reference it when I’m challenged on my gluten free decision. Is there a similar test that detects dairy intolerance as I eat a very clean diet but with dairy and still have a runny nose and bouts of flaky skin. I’ve found supplementing with Vit D3 and K2 really helpful for the skin, a tip I picked from a Robb Wolf podcast but I can’t shake the clear runny nose. I’m guessing I’ll have to exclude dairy for 30 days but that’s not going to be easy as I try and eat a low carb diet and heavy cream and cheese are convenient foods for this lifestyle, I don’t touch milk but have yogurt occasionally, too. Maybe I’m answering my own question as I write this… Thanks for all you do,

I have suffered for many years with bloating, wind, stomach cramps weight gain and many more symptoms, i stopped eating bread and had seen a improvement, i went to my doctors as i then started to lose weight after so long of weight gain. They tested me for ceolicas which came back within normal levels, i mentioned to the doctor that i had cut bread an d wheat from my diet but he succusted it would be in other foods. I then had a camera but down into the stomach and had some tissue from the stomach tested, that game back fine, my stool sample came back at 33, so they have said all good, so i have started to introduce wheat back into my diet and all the symptoms have come back worse, constipation bloating(where i look pregnant) but i still have slow weight lose. I don’t know what else todo i can’t afford a private blood test, so i think i will just have to stay on a wheat and glutin diet. What do you Think?

The patient in your example has raised IgG antibodies to many components of wheat but IgA is normal almost everywhere.

What is the significance of IgG antibodies? It is my understanding that in food intolerance testing, these antibodies usually indicate exposure to a food and may even indicate tolerance rather than a problem.

This article write has strong views, but it is backed up with links to interesting studies. But I tend to think they are probably right. You hear stories about people who eliminated foods on the basis of IgG testing, only to later show that they are now supposedly intolerant of all the new foods that they swapped into the diet to compensate for the stuff they took out.

Ignoring the IgG results, it wouldn’t necessarily mean your patient could eat gluten though. Your patient has raised IgA antibodies to native and de-amidated gluten … and isn’t de-amidated gluten peptides one of the newest tests for celiac disease? Is this test related?

Deamidated gliadin and gluteomorphins are formed during the process of digesting gluten. Therefore gluten would definitely be a problem for this patient, and that was confirmed by elimination/provocation protocol.

Deamidated gliadin is one of the first tests used to screen for CD now.

I would add that I agree that there’s a lot that we don’t understand, and ultimately there is no test that I trust 100%. If a patient does an elimination / provocation protocol and reacts strongly to gluten, but all tests (including Cyrex) are negative, then I am going to advise them to remove gluten from their diet.

The converse is a little trickier. If a test says a patient is reacting immunologically to gluten, but they don’t notice any reaction after eliminating/provoking, I’m less comfortable advising them to continue eating it. What if their reaction is “silent”, i.e. it is affecting them adversely but that effect is not apparent to them?

I appreciate the response, and agree with the sentiment – at the end of the day, if you feel better off not eating gluten then don’t eat it. So I don’t.

I cut out gluten on the basis of fecal sIgA antibodies to gluten… another test again. I didn’t know whether to trust the test, so I did the elimination and challenge.

I had actually no idea that I was reacting to something I was eating, since my only digestive symptom was constipation, and that hadn’t really registered as a problem, it was just my ‘normal’.

I did get the standard celiac tests before going gluten free but they showed nothing. In fact, I got tested twice because I wanted to be sure I was doing the right thing.

The gluten challenge for the second test gave me weird cortisol rushes in the middle of the night (actually pretty scary) and throbbing in my lymph nodes under my arms – so I’m pretty sure it’s an immune response of some sort.

I hope scientists figure this stuff out soon and stop equating FODMAP intolerance with gluten sensitivity. I can eat FODMAPs with impunity, in fact I find some of them highly beneficial, but at the same time my immune system hates gluten.

I completely agree with you Chris. I am one of those people who have a nearly silent reaction – just some minimal bloating. And I err on the side of – not putting my body into harm’s way (to the best of my ability). I can live without gluten. But I can’t live (at least, optimally) with an auto-immune disease.

The real issue to me is getting the mainstream medical community to support my healthy choices (don’t prescribe me substances that will compromise my immune system) – even if they can’t acknowledge (or test for) NCGS.

I am appreciative of functional practices that evaluate and treat root causes.

My friend has severe reaction to any slightest amount of gluten but tested as a non coeliac. The consultant told her that he actually thinks she is a coeliac but current medical tests cannot positively identify the condition in some people.

I absolutely love bread but for the past few years I have found that if I eat it on an empty stomach (i.e. breakfast) I get palpitations. However if I eat a little with other foods there is no problem for example a well filled chicken sandwich and a glass of wine eaten in the evening made me feel absolutely great. However am I doing myself harm by eating bread in such circumstances or is to OK because my body seems able to cope if the bread is eaten when I have food in my stomach ? ( Buckwheat (sarasin), millet, rye all have the same effect but chick pea flour is OK and rice only makes me feel bad if eaten several times over the period of a few days). It seems to be the high protein foods which dissipate the bad effects of bread. Why?

It’s hard to say why for sure. However, the human body is quite resilient and is able to build up a tolerance to things that it reacts to. For example, if someone is gluten intolerant and they eat gluten regularly, their *obvious* reaction may lessen over time.

However, we have to wonder what the cost of that “buffering” against gluten is. Several studies show increased risk of many different diseases with NCGS, so even though someone with NCGS may not have obvious reactions in the gut every time they consume gluten, that doesn’t mean they aren’t being affected by it.

When I was having palpitations, I found that I was also having blood glucose issues. I initially blamed all my symptoms on an allergy/intolerance. However, I found that carbs like wheat and white rice just really spiked my blood glucose and made me feel terrible. Getting my glucose numbers under control has really alleviated many symptoms. There may be an allergy component as well because anything that stresses the system can raise blood glucose. Anyhow, I’ve eliminated the problems foods and I feel well.

The fact that you feel better when you combine carbohydrates with protein and alcohol (can improve insulin sensitivity) could point to your body having problems regulating blood glucose…for whatever reason.

I got quite ill traveling last year with a really violent bout of vomiting, after that I seemed to suffer from the symptoms of GERD, which I find to be totally unbearable. So after many months of trying to work out what the problem was, I did an elimination diet and dosed up on probiotics and supplements to try and restore by gut health. I was convinced it had to be bacterial related.

Well, it turns out I am reacting to gluten, when I tried to reintroduce, I was gluten sensitive. This was Sept 2014. I have continued to try and restore my gut health through diet and supplements and have on occasion tried to reintroduce gluten. I seem to be less sensitive but still not able to eat it.

I on occasion still have the GERD symptoms and that does not seem to be related to the gluten. I was just saying to my husband I probably need to try and figure out if it is gluten or wheat I am sensitive to now.

I am trying to work out if this is actually an imbalance, i.e. it will correct itself, or if this is my new normal.

Were you ever tested for parasites? two years ago I did have much distress with acid reflux, at least that is what I was told I had. But with more investigation, and tests, I found that I had three different parasites that were causing most of my problems. Along with the parasites, I was egg, soy, gluten, and dairy sensitive, also vit D, and vit B12 deficient. After treating the parasites, the sensitivities were gone. I still stay away from the things I was sensitive to, since it just feels better all around.

My son is nearly 14 years old. When he was 5 years old he was diagnosed with an anxiety disorder, he presented with facial tics at that time too. By the age of 10 his diagnosis was upgraded to Tourette Syndrome and he was placed on Lovan for anxiety control. By the age of 13 his attention deficit was becoming a challenge at school and disastrous medical trials of vyvance and Ritalin ended with increased tics, social isolation and depression. He was taken off those meds and is now on 20mg daily of Strattera for attention and of 20mg daily of lovan for anxiety. While his anxiety and attention is fairly controlled he started to get severe abdominal pains and slowed bowel movements at roughly 12 years of age. A med trial off drugs did not improve his abdominal pains so I removed all dairy and carbs from his diet (we essentially went paleo). Despite having to reintroduce the neurological meds my son has been pain-free since dietary changes and we’re waitlisted for gluten testing with a gastroenterologist. I’m very tentative about the appointment because I suspect his gluten issues will be dismissed if not graded as coeliac disease. I aim to request Array 3 testing, do you know if this is available in Australia where we live? If not, how do I go about obtaining a referral to a country where we can have such tests conducted? My heart is heavy, I suspect much of this problem may have started when he was placed on a proton-pump inhibitor as a 10 week old baby with reflux. I wish I’d known then what I know now. Chris, thanks for your amazing articles (and books!), Julia

Unfortunately I don’t think Cyrex Array 3 is available in Australia. In this situation I would not wait for testing to confirm gluten intolerance if your son has significantly improved by not eating it. It is not an essential nutrient and there is little downside (other than the inconvenience, which is IMO minor compared to what’s at stake here).

Thanks Catriona, kind of you to give me this info. I have found a GP here who is also a trained nutritionist and works from a wholistic health centre. I’ll print out the Pyroluria questionnaire for her to look through with me. A brief review indicates to me that Michael does not have this. I’m very grateful to you for sharing this info.

I’m curious about the differing amounts of gluten in different strains of wheat. I was alerted to this by a conversation with a French chef, who refuses to bake anything with local (South African) wheat flour, as it is too strong and not fine enough. He imports his flour, a softer flour. I travelled in Europe for 3 weeks last year and ate bread with abandon, at first because it was cheap and abundant, later because I had no IBS symptoms. Once home, eczema and IBS returned, and I stopped eating wheat again.

After a period of abstinence, I’ve found I can tolerate spelt, which is apparently low in gluten. So my question is, for people who can tolerate small quantities of gluten, is it worth searching out sources of lower-gluten wheat flour? Or was my European experience simply a result of being on holiday, and less stressed?

I know I am gluten intolerant because when I do not consume gluten I have better digestion: less bloating, gas, constipation; and less fatigue. I have been battling with autoimmune diseases for years (arthritis & graves disease) and I suspect they came about because of gluten intolerance leading to leaky gut. I know how I feel and I will not listen to anyone who tries to tell me gluten intolerance is fake.

I feel much better after eliminating bread and pasta. But I wouldn’t ask my primary care doctor about such a complicated blood panel. Here in Germany even Vitamin D is not standard blood work.

I’m still not where I want to be with remaining stomach problems. Finding a more knowledeable doctor is totally impossible.

The mother last year almost died from carbs (ruptured intestines). I wasn’t able to change her diet one tiny bit, because she “needs her bread”. At least I can get some MCT oil into her from cooking with it.

Hi Chris! How validated are these tests? Many doctors and researchers are very skeptical towards Ig-testing in NCGS as they are not telling the full story. I could suspect that in these patients you also see Ig-reactions against harmless food proteins (maybe due to compromised gut or skrewed immunity). What is your experience? Lars

This test covers both IgG and IgA. The Cyrex panel is unlike other IgG and cytotoxic food intolerance tests. I am not 100% certain in its validity, but Vojdani (director at Cyrex) is a respected and published immunologist and I’ve found it to be a useful clinical tool.

Hi Chris, thanks for another thought provoking article. I have been gluten free for a couple of years now due to colitis and leaky gut. I consume daily bone broths to heal and seal my gut and take four high strength probiotic capsules daily to reconstitute the good bacteria. What I’d like to know is whether raw cacao is detrimental or beneficial to my health? Is there any compound in raw cacao that could cause problems? I ask because I make a superfood chocolate which only contains cacao, coconut oil, coconut syrup, ground amaranth, chia and flaxseed, almond butter, peppermint oil and coconut. Thank you for sharing your knowledge, Jacqui

Having had gut issues all my life, I realised wheat was triggering my terrible bloating, stomach pains and foul flatulence. Tests have come back negative for CD. After a year of what I think was chronic fatigue (dr thought it may be a mosquito virus but tests came back negative) I have finally embarked on completely GF diet and have been paleo since Jan. I am still suffering and just wish when I was initially diagnosed with IBS back in 2001 that I was told to exclude gluten back then. I am sure my health would not have reached the crisis it has now. My daughters both show signs of intolerances and I have had to fight a disbelieving husband to trial one of them as GF. Without a medical diagnosis, it is very hard to convince people it’s not all in your head.

I stopped eating gluten about 8 years ago to help my son who I thought might have CD (who was about 11 or 12 at the time). I told him I’d do it with him. Turns out he doesn’t have CD but I had NCGS (and he might possibly too but that’s a whole other story). I immediately got more energy and while I didn’t really have digestive issues, I generally felt better, not having realized that I hadn’t been feeling great all those years. In years past I could eat a bite or two of a bagel or cookie occasionally w/ no repercussions. Now, I’m 4 years Paleo. The cleaner I get, the more sensitive I get to the “old ways”. Twice in the past year I have accidentally eaten gluten. Once, there were bread crumbs mixed into egg salad that I didn’t realize till 2 days later when I was throwing up and my belly was so painful and bloated I looked like I was pregnant. It took me a month to get better from that w/ the help of my Functional Med. doc. Just a few weeks ago I ate 1 bite of a side dish in a restaurant and realized there was flour in the sauce. One bite….Again, I was sick….not as bad as the 1st time, for about 3 weeks. Gas, bloating, stomach aches. My doc suggested I carry an enzyme that breaks down gluten (can’t remember the name) for the unsure eating out times. I find it easiest to always eat at home or take food w/ me. Going out to eat I’ve found a safe haven in Mission Heirloom in Berkeley. I don’t have to ask a zillion questions and I am confident that I am getting non contaminated clean food. I find most people in the Bay Area to be fairly tolerant, and also curious. What can people say when I say “Gluten makes me really sick”!!!?? I’m very outspoken about my Paleo lifestyle and how it has helped me and many others. When I have clients (I own a Pilates studio) who complain of various health issues I always ask them if they’ve ever thought of a change of diet. I often get “I could never give up (blank)!! OK then….let me know when you are sick of being sick….I can help guide you. I know lots of people who I am SURE are gluten intolerant and more. I have to pick my battles to fight. My husband came on the Paleo bandwagon about 3 years ago. He lost a bunch of fat around his middle and stopped having a skin condition that had plagued him for years. For a while he stopped snoring, but that came back. I’ve never had an MD ask me what I eat, or even comment when I mention that I am gluten intolerant. I could go on and on but I’ll stop here. Thanks for a great article Chris.

I went gluten/dairy/soy free a year ago and noticed so much improvement in the way I felt. Chris, now I’ve discovered I’m iodine deficient, have MTHFR mutation, small fiber neuropathy, it’s taken years to get my Vit D from 17 to 40, among others. Could any of these be related to any possible missing nutrients from removing gluten/dairy/soy from my diet?

16 years ago I was diagnosed with IBS. I lived with a lot of discomfort and pain but was guided by my Dr. who said I was just stressed and that I should try to distress. Three years ago I completed a Naturopathic Nutrition diploma and went gluten free. OMG, the effects were immediate…the tap got turned off, the bloating disappeared, along with the pain. My joint pain improved and even my migraines lessened. I put my daughter who is dairy free onto a gluten free diet and her health improved all round. With hindsight I believe my Dad may also have been gluten intolerant, given all his symptoms, but sadly he died 5 years ago, so I never had the pleasure of improving his health. Several of my friends have scoffed at my diet and think it is a load of rubbish. They may think what they like. All I know is that I am much healthier and so are my clients whom I have taken off gluten. Thank you for a wonderful article and keep up the great work. Gill

I have had effects from grains that differs to effects that gave me IBS ie lactose, fructose. While there appears to be some sluggishness to gut mobility from wheat/gluten, most of my symptoms appear to be my skin and in inflammation at the cellular level – fluid retention, difficulty in weight losss. I get “hot” skin – feels sensitive, hot and uncomfortable to touch, with minor actual skin irritation visible. Tried gluten free, but it seems to be grains and to some extent carb sources from veg. Have had some testing with naturopath that showed a range of gluten factors but the rest has really only come from observation and dietary exclusion. Havent still got an explanation yet – anything more on carb and grains in addition to gluten?

Karen – I have that “hot” skin thing, too! It never occurred to me that it could be diet related. I eat a mostly gluten free, dairy free diet, but do eat a lot of eggs and have one cup of coffee (with cream or milk) in the morning…

I get hot skin too, but I’ve been off gluten and all grassland grains for 2 years. I never had hot skin (50+ years) until one day I woke up with it 2 years ago, immediately following the beginning of menopause (unbeknownst to me at the time). My skin gets hot and irritated (I can feel my nose pulsing, it’s so hot) when I eat anything to hot or spicy, when I’m in a warm room or outside in the heat without a breezy air current (72F or higher), and regardless of how warm it is, my face gets hit with a wave of heat sometime after about 9pm (usually around 11pm). When this all started I developed rosacea too. I follow a very clean ancestral diet, but I do eat buckwheat most mornings. I also eat dairy, primarily raw or cultured, but very little at night, and when the heat issue and rosacea simultaneously began, I was eating NO dairy, coffee or chocolate, but was consuming a lot of gluten (vegan-ish). Still haven’t solved what’s at the bottom of these conditions, but it’s very uncomfortable and frustrating. People keep referring to my issues as hot flashes (i.e., menopausal) and while they began with menopause, they are very different (no sweating, no waking up in the middle of the night in a pool of sweat). Mine are very temperature driven. Also happens if I have and emotional moment (tearing, crying, laughing (!)) and also a bout of coughing.

Stopped eating gluten about 7 years ago. I had been off of gluten for about 2 years and had the blood test, which was negative. I’m 54 and have had chronic gut issues my entire life: extreme bloating, gas, pain and constipation. Also have Hashimotos x 30 years. I have gone entirely grain free and feel best when I am. I am having additional immune issues, so plan on instituting this again. Both my daughters do not tolerate gluten. One gets a herpetic type rash (she had an intestinal biopsy which was negative, but she had been off gluten for over a year prior to the test) and the other daughter gets joint pain and sinus congestion. The misery we all experience after getting contaminated should be felt by he authors of those books claiming NCIS isn’t real.

I gave up wheat (and sugar) 6 months ago and have never felt better! I did so for convenience after my daughters constant tummy pains saw me cooking wheat free for her as a trial. Turns out I benefited enormously too!! I have a question Chris, last week despite my great energy and general feeling of well being (and a 5 kilos weight loss without trying!), my doctor ran a blood test and says my iron and iron stores are very very low. Yet I eat a diet that is largely paleo, whole foods, homemade, fructose free, organic, grass fed meat (plus legumes and very few grains on rare occasion such as spelt). She wants me to take iron supplements but I’m wondering if you can suggest any potential causes for iron deficiency in a pretty high iron diet. I am in perfect health otherwise. Thanks Talia

The most likely causes in women would be SIBO, low stomach acid, or other gut issue leading to malabsorption, or heavy menstruation. Note that SIBO does not always present with gut symptoms, though it often does.

For many years I tried to get Naturopaths and Doctors to help me make sense of all the food sensitivities I had. It wasn’t until about 7 years ago I happened to read a research article about FODMAPs that it all fell into place for me. Virtually every single food I’ve had problems with is in that realm. I adjusted my diet and from the first day noticed a huge difference. NCGS is real and needs to be addressed more actively by medical practitioners. It’s a shame many of us need to be our own researchers to figure these things out.

I am a card-carrying celiac since childhood and I completely agree with this post!

I’ve found that I am lucky that my intestine reacts stongly and quickly to wheat (and curiously, but less so, to certain other grains) because it trained me to carefully* avoid them and for over a decade now (since mid-thirties) I’ve had robust health with also exceptionally strong immune and cardiovascular systems. No allergies or other autoimmune than CD, good skin, resistance to colds and flu, great blood markers and blood pressure, healthy weight, metabolic resilience… 🙂

Taking the idea of this post a step further, is it possible we’ve been looking at CD upside down? After all, isn’t there usually some evolutionary advantage to a genetic variant that has persisted in a significant part of a population? Now that wheat consumption in the western world has reached a high level, more people genetically prone to CD are expressing it. Perhaps it will protect them from the less obviously related but dangerous effects of wheat throughout the body by stopping them from eating it or at keast not eating it in significant quantities consistently?

I am celiac and it certainly looks like I became exceptionally healthy after 35 or so because of that condition. Thanks so much for this post.

*I don’t need to be as careful in some countries, like Greece, where the food is mostly locally sourced from small farms and local fishermen (except in high tourism season) and nothing is “enhanced” with wheat or direct gluten in traditional restaurants. I was there recently and after asking at the first couple of “tavernas” if their sauce or dip or whatever contained gluten or wheat, I stopped asking since I was drawing blanks. It’s never occured to them! But who knows, if their government starts subsidizing wheat, maybe it will occur to them too…

I’m Greek, but I live in the US (Bay Area). Tavernas in Greece often fry their fries in the same oil as floured food, so they’re not to be trusted. A few restaurants don’t, but they have to be asked explicitly. All their small fish (e.g. sardines, which are very popular there), are floured too. Their souvlakis are now using mustard (in the olden days they only used oregano and lemon), and that kind of (cheap) mustard has corn in it, and often wheat for thickening. The only safe foods to eat in tavernas are actual meat without sauce, tzatziki, and salad. For everything else, you can’t be 100% sure.

Also, the way to ask Greeks about gluten is to simply ask if the specific dish has any flour in it or not. If you ask them about “wheat” or “gluten”, they won’t know what these are. They always refer to wheat as “flour”, and not by its actual name. The only times they call wheat as wheat (“stari”), is usually when they have… funerals, because it’s the traditional food to share among the crowd in such events (boiled whole wheat grain, looking like rice grain). For every other usage, for them the term is equal to “flour”.

As for the term gluten, 95% of them would reply: “what’s that?”. My mom fell off her chair laughing at/with me when I told her I have “koiliokaki” (celiac disease, English word comes from the Greek word). She found the term really funny (means “bad tummy” in Greek), and she said that she never heard before of either celiac or gluten, and that I’m probably imagining it.

Go figure… Especially since she has all the marks for gluten sensitivity/celiac herself (osteoporosis, arthritis, eczema, constipation, hypothyroidism…), but she won’t listen.

Thanks for the warnings Eugenia, you’re right of course about the flour used in frying some things like small fish. You can ask for them without flour and I’ve always found they are happy to oblige.

I meant they don’t seem to add flour to everything like is done over here, as a thickener. Also, either because most of the meats are local or because the government just hasn’t allowed it, there’s no ‘filler’ (which is allowed in processed meats here and while it’s mostly saline solution, there’s sometimes ‘vegetable protein’ – which is usually gluten).

One set of grandparents are from Greece and I have relatives there, I speak the language and have visited for decades. I started asking about sauces and such recently, but as I said, they have no clue. “Why would they use ‘alevri’, that’s not how to make tzatziki!”, or skordalia, or melitzanosalata, or… If it’s not in the traditional recipe, it hasn’t occurred to them to use flour as filler or thickener…yet. So it’s easy to avoid wheat, you just avoid things that are obviously made of flour. Whereas here, I find it harder since a lot of foods have it hidden. It’s easy in the supermarket, but at restaurants I have to ask about every single thing, salad dressings, everything…it’s tiring, eh? The only trouble I have in Greece is in August, until I realized the food supply isn’t of course local after 15 million tourists descended on the place all summer, so I’m very careful in tourist season!

You’re grandma isn’t from Athens or Thessaloniki? They seem pretty aware of ‘koiliakous’ (people with coeliac) in the larger cities. Many areas of the country of course don’t have any, so they don’t know. My family has a history of it, but members of one branch, from Lamia, had no idea what the rest of us were talking about. “What do you mean you can’t eat bread? Psomi?! Xristos kai panagia!” Like that 😉

Sorry Eugenia, I meant your mom. I was thinking of my own greek grandma – she has a lot of those symptoms too, but she stubbornly prides herself on not having the “koiliaka” troubles that some of us do. That her own infirmities may also be from wheat is just not acknowledged!!

I’m from Preveza, originally from a mountainous village there, so people there don’t know about celiac. 🙂

Regarding sauces: indeed, except besamel, their sauces have no flour. However, most of their processed meats and salamis do. Also, even if you asked them to cook the fish without flour in restaurants, you’ve been glutened no doubt, because they use the same deep fryers, or the same grill. There’s no avoidance of gluten in a fish restaurant I’m afraid, while it’s easier on a meat restaurant.

Yes, that makes a lot of sense. I do find though that when I’ve been really ‘clean’ of gluten for a while, I can tolerate the small amounts (mg levels usually) from various types of cross-contamination. Do you notice any such effect? I didn’t know about the salamis and such, though I’ve eaten local sausages (especially in the mountain regions of Krete and Evia, in Volos and on Taygetos) and didn’t have a problem. Would you say the traditional preparations vary from region to region?

Also I’m convinced that all that greek yogurt, garlic, onions, dandelion greens (“horta”!) etc. do wonders for my gut and increase my tolerance (echoes of Alessio Fasano?). I use a lot here too, especially in the last decade or so of conscious, careful gut-minding 😉

Sigh. I just feel so physically good when I’m there, probably because the family there generally cooks ‘clean’ as we call it, but even when traveling to islands like I did this May (Santorini, Crete, Evia) and eating in tavernas all the time, it’s easy to keep clean. Basically avoid bakeries (and boy that’s hard, they’re on every corner!!) and some fried foods. With all the rotisseries everywhere and the abundance of baked and grilled fish dishes and vegetable/olive oil dishes, I don’t feel like I’m missing out at all though. Plus, they still make fresh french fries at most places. Sigh!

It’s a shock each time I come back. Within days, some hidden thing I forgot to check (being in relaxed mode after the trip) has triggered intestinal upset and I need a couple of weeks to get back to normal.

FYI, there are a few outstanding Greek restaurants in the SF Bay Area that are incredibly knowledgeable and sensitive to gluten issues. Evvia and Kokkari are fantastic, and almost their entire menu is gluten and grain-free without modification, with a few exceptions. Their servers are hypersensitive/knowledgeable. That said, I still agree with Eugenia that it pays to be cautious. For frying, most restaurants use transfats (like rice bran oil), so I avoid anything fried on the menu at all restaurants. The potatoes at those 2 restaurants are yummy, but I order them oven-roasted with olive oil. They’re first prepared that way, then flash fried before serving, so they just skip the last step for me. Sadly, I have to skip the calamari all together. I only order fries at a restaurant that offers tallow fries and where I know freshness/health are paramount — Belcampo is one, but you have to ask for tallow fries, they have regular fries too.

I used Entero Labs in 2009 and was told that I had genes that predispose me to a gluten sensitivity (though no Celiac disease). Went gluten free afterwards and saw significant improvements in my skin and overall health. I also need to be dairy and coffee free. I’ve had parasites, late stage Lyme, and a mycoplasma co-infection though so I imagine that has been significantly impacting my ability to digest, detoxify, and my immune system’s relationship with foods. Would be interesting to see more about how chronic unresolved infections play a role in the development of food intolerances … as you mentioned many of the people who use Cyrex are already sick.

Hi Chris I did the Cyrex Array 2 and have no permeability ie. no LPS showing up in blood, however, every time I do the lactulose/mannitol test it shows up with a high level of leaky gut. How do these two tests correlate? thank you for sharing your clinical experience with NCGS.

My daughter (8) has gluten sensitivity. She was about 5 when it all started – always pale, always tired, and started getting infections that wouldn’t heal. She would physically gag on food, and extremely fussy. Bloated stomach and gas that would clear a room! It took 4 different doctors who didn’t believe me. One Dr even said she had a chronic case of strep throat. My big concern was to definitively establish that she didn’t have celiac disease so that I knew if she had gluten occasionally it wouldn’t hurt her. Now I am concerned that by giving her treats (with gluten) this could potentially put her in line for an auto-immune disease later in life. Chris, what is involved in getting the test done as shown above? I am in New Zealand…

It would be difficult to send a blood or stool sample to the US at Enterolab or Cyrex labs *in time* (these tests are time sensitive). I’m no doctor, but It might be easier to try to get to the bottom of this the old way: get your daughter in a completely GF diet for 30 days (avoid gluten-free baking goods too, since they’re as processed), and then on the 31st day, get her to eat a bit of wheat pasta. If she reacts in ANY way, she’s intolerant to it and shouldn’t have any gluten at all from that point on. Consult your doctor(s) first about this suggestion though, since it’s a child we’re talking about.

The Cyrex Array 3 is a blood draw, so unfortunately it’s not possible to do from overseas. However, as I noted in the article, an elimination/provocation challenge is still considered to be an accurate way of assessing NCGS.

I used Enterolab 12 years ago as my proof that I needed to be gluten free. The change in my health was close to a miracle. The list of symptoms was long and they either disappeared or greatly improved with a gluten free lifestyle. The main reason I looked into gluten was because of a very painful peripheral neuropathy. Still have some numbness, but no pain! I have to be careful not to get any gluten even from cross contamination. Life is good.

Yes, I take methyl B12 and some other supplements that are said to help With PN. After going GF I found that my blood sugar after eating was over 200. For the past 6 years I have used low carb and now keep blood sugar under 100 all the time. But the greatest improvement in the neuropathy came during the first 18 months gluten free. I wish it would completely resolve but I think the damage was so great that my feet will probably never feel totally normal.